Synapse21: The CurePSP Brain Bank Benefit Event

0:12 [Music] 0:46 [Music] 1:08 [Music] cure psp is the foundation for prime of life 1:15 neurodegeneration a spectrum of incapacitating 1:22 and incurable diseases with debilitating motor 1:28 cognitive behavioral and emotional symptoms these afflictions often strike in middle age 1:35 when people have careers family responsibilities 1:40 and active lives so they include progressive super 1:45 nuclear policy which is also known as psp cortico basal degeneration or 1:52 cbd multiple system atrophy msa chronic traumatic encephalopathy 2:01 cte and others the mission of cure psp 2:07 is care consciousness and cure for devastating 2:12 crime of life neurodegenerative diseases my name is bob driver 2:19 and i am [Music] 2:32 i am edna montano and my husband nigel suffered from progressive supernuclear 2:38 palsy psp my name is linda phillips and i have psp gracias for a company 2:50 thank you [Music] 3:07 hello everyone uh and welcome to synapse 21 the cure psp brain bank benefit 3:14 um i hope that everyone can hear us i hope that everyone enjoyed 3:19 this very powerful and very touching presentation and start of this even today um 3:26 i'm just going to pause for a few seconds to make sure that you can hear my voice um you we have our 3:33 team on the chat uh if you can't hear my voice so maybe you can leave a message in the chat but 3:39 hopefully the music we played uh for a few minutes and this introduction allows you to 3:44 to figure out all the the the technical issue and and the challenge of those new platform that we have to utilize in 3:50 these uh difficult time all right so i'll get started uh welcome to this virtual event to support a critical 3:57 aspect of research towards a cure thank you all for joining us this evening i'm 4:02 kristof diaz and this is my pleasure to welcome you all live from our headquarters in new york city i'm the 4:09 vice president of scientific affair at cure psp and with me tonight is our masters of ceremony bobby d bobby welcome to the 4:17 show oh hello there everyone my name is bobby dean i'm with inspire hearts fundraising and i am so honored to be a 4:23 part of this event that's not only doing life-saving research but providing resources for parents family and 4:29 healthcare professionals and that's where you as our community gets to come together as a family to help not only 4:35 it's it's it's care it's cure and its conscience and then just as you've seen in the video but yes 4:41 it's gonna be an amazing night and with your help and your support and your donations uh we're gonna be one step 4:46 closer to uh curing psp and all of these crazy brain diseases that are with us so uh at any time of the night you do feel 4:53 so inspired you can text in cure psp to 41444 and make that 4:59 donation but make sure you check out those silent auction items and we've got some great things that are going to be over there and we'll tell you a little 5:04 bit more about that later but uh i think it's time kristoff let's get it started an honor to be here with you all today 5:10 virtually i'm looking forward to meeting you all in person when we can in the meantime we've gathered uh for you and 5:16 uh we've gathered here for an important cause and i'm grateful that you all joined um again hopefully you can hear 5:23 us uh feel free to interact and say hello in the chat let us know uh how you're doing if you 5:28 have any issues and for example tell us where you're joining us from uh we'd love to hear from you uh bobby back at 5:35 you speaking of the chat i mean we have some friends that are joining us literally 5:41 nationwide we have friends in dallas uh grand rapids uh rochester minnesota a male location as well a friend from 5:47 california jacksonville florida another mayo location there's some amazing work 5:52 that's going on all the way through there so if you are joining us uh and uh might be using one of those other 5:59 browsers uh we'll suggest you go over to chrome um if you can't hear me um there is a speaker icon on the lower left side 6:06 uh over there and you can hit that button right there to make sure that you hear that but make sure your window is 6:11 in full screen mode too uh if you can't see the chat on the right side there's uh four little uh buttons right there 6:16 just click that and you see the chat pop up there it is look at that it's so great to see some friends uh that are 6:22 here uh joining us here it is gonna be a nationwide i mean maybe a worldwide event because here we are with cure psp 6:29 we're all working together to make this happen and and help provide it so uh if you do happen to uh close this with the 6:35 window don't worry don't worry uh you can hit the back button and then just click the link again and uh that email 6:41 will be sent and you'll be back no big deal and then this event is going to be available on the cure pspu youtube page 6:47 in just a few weeks and we'll email everybody when it's ready um there's some several buttons at the top of the 6:52 screen and we have the register learn more about the brain bank calendar as well as our silent auction uh there's 6:58 some great items that are in there of some handmade items some pieces of art some quilts some other things uh that 7:04 really uh represent how grassroots that this is and how cool would it be to own 7:09 uh one of these pieces at the same time uh to help us raise a lot of money because uh remember friends it's not 7:14 about what you're getting this evening it's about what you're giving that's right giving back to cure psp for that 7:20 research uh the resources as well as helping the our families uh that are helping to provide those brain donations 7:27 uh but uh yeah it's uh if you just click around with your uh your you know your mouse open a new window um you can hit 7:32 right click and then open a new tab and that's all kind of over there um if you're like me i have lots of screens all over and uh 7:39 you can see everything that's going on but uh yes kristoff i think we have some amazing sponsors we're going to be 7:45 thinking here yeah so i'll move on to that before i give you a bit more information about today's uh and and 7:51 your psp i would like to thank a bunch of sponsors that have helped us support this event our brain donation fund which 7:58 we'll tell you a lot about today and cure psp in general so i want to thank you all stripes biohaven 8:04 bristol meyer squibb lighter d foundation a loon back power over parkinson and a broady foundation so 8:12 thank you all for the sponsor uh without whom uh we could not run this even tonight so um 8:18 i'll i'll tell you uh oh one more person a special person i want to thank uh is dr sagliano i will hear about her today 8:25 uh she'll participate to a patient uh testimonial with with other fantastic speakers there but i want to thank her 8:32 uh for a generous donation and her participation to today's event so we're looking forward to spending 8:38 this 90 minutes with you we worked hard on this virtual celebration and fundraiser to support the cure psp brain 8:43 donation program it's operated in collaboration with the myoclinic brain bank in jacksonville 8:48 florida the myoclinics brain bank is a vital resource to research and scientists because it provides tissue 8:55 sample that are essential for discovery as you learned today brain donation as an extremely are an extremely important 9:01 resource a brand donation represents the ultimate gift to science and most importantly for 9:07 the development of new cures and treatments for all neurodegenerative disorders we'll underline this 9:12 throughout the evening the valuable samples obtained by a brain bank are not just important to advance our basic 9:18 understanding of thought of tough diseases such as psp which is the goal of research those 9:24 dedicated to the life sciences need brain donation and the resources to support brain banking so they can 9:29 advance cures this is our ultimate goal and the center of cure psp mission 9:35 another important and critical role of the myoclinic brain bank after a brain is donated the family of the deceased 9:42 receives a neuropathology report that will do its best to confirm the 9:47 diagnosis of the loved one as you will learn today from our testimonial the service provide closure and solace to 9:53 family and that's very important to the community bobby will talk more about that but i'd like to mention uh that for many years 10:00 cure psp has reimbursed some of the costs associated with brain donation your support today will enable this 10:06 reimbursement for many years to come thanks to you when a family wants to participate in this program they will be 10:12 able to so before bringing some of our guests and important voices of our brain bank 10:18 initiative let me tell you a little bit more about your psp for over 30 years cure psp has been the 10:24 foundation for prime of life in road regeneration cure psp is a leading non-profit advocacy organization 10:30 focusing on progressive supreme criminal policy psp cortical basel degeneration 10:35 cbd and multiple system atrophy or msa at cure psp we thrive to provide support 10:42 to patients their families friends and caregiver we also focus on better understanding the biological causes of 10:48 neurodegeneration and importantly in advancing projects that represent hope for new treatment and cure 10:55 cure psp is a grassroots charitable organization let me give you a compelling example of what i mean by 11:01 that since the beginning of the pandemic 11 000 individuals have donated to cure 11:06 psp your generosity is our lifeline and i'd like to thank the thousands of donors 11:11 and emphasize that working for a foundation supported by real people from all around the world makes our team very 11:17 proud your psp is also the main source of information and assistance for patients family caregivers researchers physician 11:25 and healthcare professional another example since 2019 we've provided more than 1500 printed 11:31 information packets to families starting their battle with these difficult journeys another and one last example before i 11:38 give the microphone back to bobby is that since 2017 thanks to the cherry libyan quality of life fund we've helped 11:45 more than a hundred family pay for in-home care speaking of the cherry lebanon quality of life fund cure psp 11:51 has another event on july 14 supporting this initiative mark your calendar and visit our website for more information 11:58 at psp.org back to the purpose of today's gathering 12:03 pure psp brain tissue donation program started in 1998 and has been collaborating with the myoclinic from 12:10 the start since then under the leadership of the myoclinics director dr dennis dixon 12:17 thousands of scientists from around the world have advanced our knowledge of brain diseases by donating a brain to the brain bank a 12:24 scientific legacy is created by donating a brand to a brand bank families are enabled a family enables 12:32 studies that would otherwise be impossible to conduct ultimately you bring to life possible breakthrough 12:39 passing the button back to bobby kristoff that's absolutely right ultimately you our friends our 12:46 volunteers our donors are the ones that bring that life to these possible breakthroughs and and we couldn't have 12:51 done it without you and many people don't know that when a patient passes away that there's costs associated with 12:57 donating their brains neither cure psp nor the mayo clinic imposes a charge for any part of the brain donation process 13:04 however charges are typically imposed by the technician performing the steps to donate the brain and this cost usually 13:09 ranges between 500 and 2 000 and it's the responsibility of the family but at 13:14 cure psp we recognize the expenses that related to brain donation can be prohibitive for some families and 13:21 they're like yeah i want to but i just can't but many years ago thanks to generous donors like you we created the 13:28 cure psp brain tissue donation fund and this has allowed cure psp to provide 13:33 financial assistance to hundreds of families that pledged for a brain donation your generosity today will help 13:40 us to replenish this fund so we can continue to keep on reimbursing families for many years to come now friends we 13:47 have a big goal ahead of us today it's a hundred thousand dollars i know this is ambitious but i know together we all can 13:54 work together to make this happen and with your assistance we can achieve it and more we're not gonna stop if we 13:59 hit a hundred thousand and we are off to an amazing start already we have well over a hundred donors look at 107 donors 14:06 oh my gosh frank and amy and eric and kevin and linda thank you thank you thank you we have some amazing 14:11 volunteers that are watching us as well fran and mary jack phelps rick thank you this is so so 14:18 awesome and friends yes as you see dr nancy stegliano's name up on the screen 14:25 she is providing a matching gift here this evening a matching gift but that's a challenge gift and we are challenging 14:32 you our friends that are watching here this evening to help us match forty thousand dollars so with dr stegliano 14:39 and you forty thousand dollars could come together to get eighty thousand 000 and that means we're just 20 000 away 14:45 from that hundred thousand dollar goal so friends right now if you can give and text cure psp to four one four four four 14:53 and you can uh make that donation you can also click at the top uh there's a big donate button right 14:59 there big and red you can't miss it and cure psp red but you can make that donation right there but uh yes we have 15:05 some more donations coming in oh my gosh look at that friends we're over halfway there that is so so great frederick 15:10 thank you elizabeth thank you barbara alice and friends let's do this let's match this and here let's do this now dr 15:17 stegliano lost her father to psp and personally understands the importance of research and a family's journey through 15:24 nero neuro degradation uh she's a leader and an entrepreneur in biotechnology and her 15:30 support is a recognition of the importance of brain donations and brain banks and that's what you're here to 15:36 fund so please friends if you can make that donation we'll be matching that and we'll work together because we have our 15:42 researchers we have our scientists we have our doctors and we also have our families and we have you joining 15:48 together in collaboration uh and uh for tonight i i'd like to just throw this number out there uh for anyone that 15:55 donates 750 which signifies uh the reimbursement grant that we provide back 16:00 to the families that make their donation we're going to throw in a cure psp because hope matters blankets so you can 16:06 wrap yourselves in that you can feel that warm hug that the cure psp family provides and tonight again it's so easy 16:12 to give on that mobile phone you can make a gift of any amount so please please get that smartphone out open a new text message so easy and type in 16:20 there the two area of the text message four one four four four and then message 16:25 cure psp pick send and then you'll get a text message and response and with that link you can fulfill your pledge um 16:32 right there and you can give one time uh you could give monthly uh so many other great ways that you can give a right 16:37 there super super super easy and if you need any assistance just email us events 16:42 at curepsp.org or click the donate button on the top of your screen super easy and 16:48 those of you to donate tonight are going to be over on the chat well i mean look at all the names that are coming up tamara lynn patricia and 16:55 no gift is too small and also no gift is too large so if you want to give multiple times this evening you can go 17:02 ahead and make that happen but yes uh and and like i said you know mike thank you judah thank you eileen thank you 17:09 this is great um we also have our great silent auction items uh that are available as well too now to check out 17:15 the uh items just click that auction button it's right there next to the donate button uh and you can see all 17:20 these great items that we have we have many items including a painting from bra braca as well uh turner who has had psp 17:27 rocket turner uh get in there on that painting jewelry life coaching sessions and now that we can travel again thank 17:33 you they were shooting fireworks off in new york to celebrate the lifting of the restrictions we also have a three night 17:40 wine experience in sonoma as well as a broadway vacation for two to right here 17:46 in new york city and friends i know that you want to come here get back to broadway broadway lights are going to be brighter than ever and uh we couldn't uh 17:54 couldn't couldn't invite you even more deeper than into this beautiful city well friends before we get started um we 18:00 want to see you if you eat audience get social show us your pictures uh with your snack boxes um as well as your 18:06 party and place boxes on twitter and instagram use that hashtag hear psp and 18:12 hashtag synapse synapse21 and now uh friends uh we're gonna get started kristoff back to you thanks 18:18 bobby i hope uh bobby's energy is convincing everyone uh to to give to cure psp i'm very excited 18:25 to be working with you on this even bobby so our first speaker tonight is dr amy romell 18:30 she joined the rainwater charitable foundation in 2018 where she guides medical research programming with the 18:36 primary focus on the rain water price program and other public outreach efforts 18:42 dr romel has been featured a featured speaker at numerous public events such as a tedx san diego she has participated 18:49 in several community programs and advisory effort including those associated with the cancer moonshot and 18:55 the world economic forum in addition she continues to be an avid supporter and 19:00 volunteer for stem education outreach and science advocacy i talked to amy rommel i talked to her 19:06 many times we collaborate frequently but before this uh this even evening i wanted to to have her sense of how she 19:11 would summarize her talk and her presentation and she said to me this very simple and efficient statement 19:17 collaboration plus access equal treatments and this is something that we hope 19:22 we can feature today and that everybody can remember that access to tissue and 19:27 collaboration between all scientists can truly advance treatments and and we're here to support this program tonight so 19:32 thank you for being with us dr romell and welcome to our virtual benefit thank you kristoff and the team at cure 19:38 psp for this opportunity to share with your community we have been working on together 19:44 for those of you who we have not yet met the rainwater charitable foundation was created in the early 1990s by renowned 19:51 private equity investor and philanthropist richard rainwater initially the foundation supported k-12 19:58 education and other worthy endeavors but in 2009 richer was diagnosed with 20:03 progressive supernuclear palsy which launched the foundation's research funding to accelerate the development of 20:10 new diagnostics and treatments for psp and other towel-related neurodegenerative disorders 20:17 during that time the foundation gathered scientists whose mission was to collaborate share data and resources and 20:23 work with urgency to better understand this disease so treatments could be generated 20:29 that group became known as the tau consortium which now consists of just over 48 lead researchers as well as 20:36 dozens of post-docs and students and other organizations like cure psp 20:41 with more than 145 million dollars invested to date the rainwater charitable foundation has helped advance 20:48 eight treatments into human trials and has dozens others in the pipeline within our network of collaborative researchers 20:55 during our time trying to get effective treatments across the finish line we learned a few things 21:00 the most important thing we learned was access is a problem specifically access to high quality 21:08 tissue and associated clinical and genetic data from our bio banks remains 21:13 a barrier to research and drug discovery productivity especially with respect to 21:18 rare diseases like our focus psp if researchers or pharmaceutical 21:23 companies cannot access or are delayed in accessing these tissues and information it is near impossible for 21:30 them to initiate or maintain a research or drug discovery program in that disease 21:36 biobanking infrastructure has critical impact on the pace and effectiveness of drug discovery 21:42 our biobanks need our help so they can expand this needed access and avoid any 21:48 bottlenecks causing delays in collaboration and partnership with cure psp and now also the aft we are 21:56 supporting an initiative to establish a federated network of four biobanks with 22:01 an upgraded data management solution and a centralized research-facing tissue access portal that will allow 22:08 researchers to assess tissue inventories online and request tissue through a 22:13 seamless web-based system the four biobanks that have come together to collaborate for this 22:20 initiative include the icann school of medicine at mount sinai led by dr john crairy 22:26 boston university school of medicine led by dr ann mckee the mayo clinic in jacksonville florida 22:33 led by dr dennis dixon who you will hear from later this evening and the university of california san francisco 22:39 led by doctors william seeley and leah grimberg right now we are three to four years out 22:45 from this initiative being completed when all four biobanks will be fully upgraded and linked within this unified 22:52 network with each partner organization that comes on board and with each donor that 22:58 supports we accelerate this timeline to bring these four bio banks together and 23:03 bring their systems online to expand this much needed access 23:08 ultimately this will get the needed effective treatments for those that suffer from psp across the finish line 23:15 faster all of us collaborating and increasing this needed access will equal more 23:22 treatments in the pipeline collaboration plus access equals 23:27 treatments thank you for being here with us we can do this together 23:33 thank you dr romell for sharing your perspective and an update on the biobanking initiative that we just 23:39 recently launched in collaboration with your organization and also the ftd 23:44 we are honored to have the rainwater charitable foundation be part of this program tonight when richard rainwater 23:50 was diagnosed with psp in 2009 he put together many collaborative programs to advance science and research we've 23:57 worked together for many years and more recently we co-funded research projects that are advancing new cures for 24:03 taopathy which are talpati tau being the protein that is involved in psp and cbd and many other 24:10 neurodegenerative disorders including alzheimer so i i seek your psp in our 24:16 collaboration with the renoir charitable foundation as the entity that is bringing the patient voice uh to 24:22 the rainwater foundation's important and transformational work so let's let's continue with the night 24:28 and uh i'll pass the microphone to bobby now that's right like dr almost said we can do this together we can do this 24:34 together and it's collaboration plus access equals treatments and you are 24:40 collaborators you are helping us with this research and you are helping us to fund this great brain brain bank as well 24:47 as grants uh for these families that are so i mean they make the ultimate uh donation i mean it's that brain that 24:54 we're able to research and find you know that you know and work towards that cure and uh these collaborations are 25:00 absolutely critical in advance these discoveries to slow or cure neuro 25:06 uh neurodegeneration now it's this is not just an in an older you know as you 25:11 you know age uh type of disease i mean there's people that are in the prime of their life 50 55 60 65 that are 25:18 developing these diseases and they don't know where they come from and that's where your donations are able to help 25:24 here tonight this is this is research and today right now right now you have that opportunity to be a part of this 25:30 and collaborate with this and collaborate with a gift and as a reminder remember with the generosity of 25:36 dr stegliano all gifts today are going to be matched up to 40 000 now friends 25:41 if you look at that thermometer really fast oh my gosh we are continue continue 25:46 to rise we are 64 of the way there but let's make it a hundred a hundred and ten percent uh we can do this um i wanna 25:54 thank uh amy any branch one of our board members can thank you thank you for donating uh for one of our grants and uh 26:00 because you've donated 750 or more you receive a blanket yes let's get some more friends to do that as well of a 26:07 speaker that's coming up a little bit later uh dr cow amy cal has also just donated as well and nick 26:14 oh look at this nick brother of dr stegliano steps up and says you know 26:19 what i want to provide a grant for a family to help cover those expenses of the donation that's awesome that i mean 26:25 that that like i said it's family it's everyone coming together and this is uh 26:31 this is this is epic this is this is we're going to continue to do this so friends keep going keep giving we want 26:37 to thank mike de graafid uh matthew mccannon tamara panachi and jeff ring 26:43 thank you thank you as well as a special thanks to our cure psp board of directors amy again thank you for your 26:49 help everett cook and bill and eileen mcfarland for your donations as well as our former board member dr jeff friedman 26:56 who's currently hiking to raise funds for cure psp he's climbing a mountain 27:01 and we're climbing a mountain here this evening and friends we keep getting closer because you are helping us to match those donations from dr stegliano 27:09 and we're going to do this together i know we are so friends don't forget about that silent auction that we have there's some great great items in there 27:15 click the auction button i know i wish we all had could have that live auction and i could do that auction talk that 2500 out of 35 45 55 no it's a silent 27:23 auction so shh click the button click and win so we uh want to bring this over to uh 27:28 uh one person uh carol laughlin who's benefited from the brain bank and mail 27:33 carol recently lost her husband to psp and he donated his brain to the clinic and this 27:40 is their story have a watch my husband was initially diagnosed with cortical basal degeneration or cbd 27:47 and that was subsequently changed to psp so the autopsy was very important to us 27:54 to know what he actually had which it turned out was cbd my husband was 28:00 hesitant to participate in the program but as we interacted with the people in our 28:06 support group and learned what their plans were and why he changed his mind 28:12 this was about a year before he passed away and 28:17 in preparation for it i called the mayo clinic in jacksonville florida 28:23 and got information from them about the paperwork and the process 28:28 and began to get things ready for uh for the time 28:33 when it came the people at the mayo clinic in jacksonville were very very helpful gave me the information that i 28:39 needed paperwork that i needed to complete and 28:44 the information regarding the deaners in the area who could do the brain harvesting 28:50 and so i completed all the paperwork got everything lined up worked with a 28:56 funeral home so that we had the facility available when he did pass to be able to 29:02 do the harvesting it's very important to make sure that the funeral home has has that ability or 29:08 has another facility they can use it was very important to us my family and and 29:14 myself because we had conflicting diagnoses he was diagnosed originally with cbd 29:20 and then subsequently with psp so we didn't really know what he had and there were a lot of 29:27 questions the process started with completing the paperwork for them 29:33 submitting that to them and then arranging for someone to do the 29:39 the harvesting of the brain when the time came and 29:44 we went ahead and contacted what they call a deener in in the area 29:50 and set that all up in advance it is very very comforting to know 29:56 that teres brain tissue has been sent all over the world 30:02 where they're doing research and that ultimately this will help other people 30:08 it didn't help him but it will help other people and there's great comfort and peace to that 30:13 we also provided the autopsy to his neurologist 30:18 in hopes that it will provide him with key information in making accurate diagnoses going forward 30:25 cure psp was instrumental in helping us get through 30:30 this three and a half years of illness with my husband the support group was 30:38 just priceless and the information that we learned through participation in the in 30:44 the support group helped us navigate this journey 30:50 [Music] 30:58 well friends they say that a picture is worth a thousand words and with that video i 31:03 mean that's that that's worth a million right there and this video it said it all i mean however there's still so 31:10 many questions when it comes to these many brain diseases and as carol said that ultimate donation 31:16 is helping so many beyond the passing of their loved ones and many of us know how huge of an issue 31:22 this brain disease is and many of you have had friends and loved ones that are affected or will be affected and we 31:29 understand the staggering weight facing this generation and here's some numbers i just want to talk to some numbers with 31:34 you and uh these are some dollar figures now i'd like to see and if there's anyone out there that like to make that 31:40 inspirational donation and uh making a donation of fifteen hundred dollars these fifteen hundred dollars supports 31:47 the genome sequencing that has the potential to be an important tool to guide therapeutic intervention to brain 31:54 disease in the future i mean you think of how many neurons and synapses are going on in the brain at any time and 32:00 then there's one little piece of code in there that gets flipped and that can tran you know transition into that brain 32:05 disease but by working together and looking at these genome sequencing they can go in and they can fix that and 32:11 they're trying to find this cure and with your help we can do this and as we said kind of that magic number that we 32:16 have this evening 750 dollars fully funds one bro brain donation and you get 32:22 a blanket from that even get that nice warm hug so i mean who who doesn't want to be a part of that and you know i want 32:27 to thank so many that have already given at that 750 level um i really have to thank bill mcfarland and his wife eileen 32:35 for stepping up and saying yes we are going to fund uh one of those grants for one of those brain donations so i want 32:40 to thank you so much thank you for being the chair of and all the great work that you both are providing here at cure psp 32:45 i mean what a great leadership stepping up and doing that now friends you might not be able to make that gift at that 750 level it's okay because they say 32:53 teamwork makes the dream work and we are all part of this team we are all part of this family and maybe you can make a 32:59 donation of 100 or more and and this is a great way to sponsor the ask the scientist webinars 33:05 to educate other neuroscientists on the latest research i mean that's that's what it's all about it's these research 33:12 and these resources for healthcare professionals because there's so many questions and yeah because they are 33:18 neuroscientists they they i mean they know they don't know it all and they come to the experts at cure psp that are 33:24 doing the research and are able to help provide that and and open source i mean it's like look here this is what we have 33:31 and this is how we can help because together we're all fighting these brain diseases and maybe friends uh you want to make a 33:37 50 donation and what this 50 donation helps us to send educational uh packets 33:42 to people that want to learn more about the brain notation process i mean this is a scary thing especially with the 33:48 doctors like have you considered a brain donation with you know from your loved one and you kind of might take a step 33:54 back and be like what what what are you talking about but to have these informational packets to share with them 33:59 and and to say look look this is how you're able to help save lives you know beyond this great life that you've lived 34:06 and and you can your legacy can can live on i mean it's it's so very very amazing 34:11 so friends won't you be a part of the future of neurodegenerative research please please 34:17 right now this is that time uh type in cure psp to four one four four four and 34:23 click in and and be a part of that or hit that big red donate button and help us be a part of that i just wanna take oh my gosh friends we're 67 percent of 34:29 the way there we are so close to helping funding this and and we're doing it with your generosity this evening so thank 34:35 you thank you again to all of our donors that are out there mary jo deanne teresa kathy look at that carissa oh my gosh so 34:43 many donors that are there so uh this uh the generosity is inspiring and it's uh it's also electric and uh let's uh let's 34:50 see some more electricity uh kristoff uh i think we've uh have a really really awesome video coming up here so why did 34:56 she introduce us thank you bobby uh before i introduce uh everyone here i just wanted to uh we're 35:03 getting a lot of live information here being fed to us during this fundraising it's very exciting um 35:09 so i just want to thank uh personally and on behalf of cure psp everett cook as also a board member who just donated 35:15 i believe twenty five hundred dollar two thousand and five hundred dollar i thank you so much everett uh for your support 35:21 in general and for for your support tonight um and bobby we'll we'll keep on tracking 35:27 the donation and and thank the people so uh we've already mentioned our next speaker many times tonight and dr dennis 35:34 dixon uh we also should mention his team and his work uh how dr dixon and his team 35:41 oversee the operation of the brain bank at the myoclinic in jacksonville so dr dixon is a world-renowned 35:47 neuroscientist he's a thought leader and experienced researcher he's an expert neuropathologist and has advanced a 35:54 field in diagnosis of many diseases including psp cbd msa but also ftd als 36:01 and cte dr dickson also works in alzheimer's research and is a brain bank that has a 36:07 one of the biggest collection in the united states so dr dixon will will talk a little bit about the brain bank its 36:14 operation and its important role in research so i hope you enjoyed the video uh and uh and we'll meet you and we'll 36:20 meet right after that thank you okay my name is dennis dixon i'm sort of pathology and neuropathology at 36:27 mayo clinic uh in jacksonville florida and i'm going to give you a little bit of information 36:32 about our brain bank for neurodegenerative disorders um 36:38 so the although mayo clinic is in in jacksonville florida we in fact receive 36:44 brains from all 50 states and the number of brains that we get it depends to some extent on the population 36:51 so we get a lot of brains from florida and actually a lot from california and 36:57 states like texas a very populous state but we actually get it from from all states of the united states 37:04 and this initiative is was initially 37:10 established for psp brain donations but subsequently it's been expanded to other 37:15 disorders such as lewy body dementia and multiple system atrophy as well 37:20 what when we get a brain we we uh have to uh do some evaluations uh 37:26 and uh in order to understand what the disease is and then uh 37:33 to be able to use that uh that brain tissue for research we need to know exactly what the disorder is 37:39 so upon receiving the brain and usually the half of the brain is fixed in 37:46 preservative formaldehyde and the other half is frozen usually in a very cold freezer like a minus 80 freezer 37:54 and um the the fixed half undergoes a systematic uh dissection and 38:00 sampling and those samples then are used for histologic studies 38:06 we do this in a what we call a brain cutting conference in which the clinical information 38:12 for the patient is summarized before we dissect the brain and 38:18 and then the there's discussion of the case discussion of the findings and how it 38:24 matches or it doesn't match the the um the clinical information and this 38:30 green county conference is attended by research trainees um and students graduate 38:37 level students so once the tissue is dissected the the tissue is embedded in 38:42 paraffin wax so this is a section of brain tissue it's actually a midbrain section and then the these 38:49 uh embedded sections are cut with a very sharp uh blade it's called a micro tone 38:55 um the sections that are mounted on glass slides and then there they go through a series of staining processes 39:02 that generates a set of slides on a case for multiple different brain regions all stained with 39:07 a histologic stain that re those slides are then evaluated with a microscope and from the 39:13 microscopic evaluation we generate a diagnostic report and we collect 39:19 quantitative parameters on the brain that can be used for research research we then send a copy of the report and a 39:27 letter to the next of ken is uh summarizing the findings in late terms 39:32 so in the since the brain bank was established in 1998 uh and this is this isn't uh quite up to 39:39 date but we've we've generated over 4 000 diagnostic reports that we've sent 39:44 to family members or and to the uh or to the clinician involved in the care of 39:50 the patient the brain bank has over 6 000 uh frozen fix specimens and uh over six 39:58 thousand frozen specimens the frozen tissue as i mentioned stored 40:04 in a very cold freezer they're sometimes called ultra freezers because they're it's it's minus 80 degrees centigrade 40:11 um and these are these are examples of the types of freezers each freezer holds about 40:17 somewhere between 50 and 100 brains depending upon how much of the tissue is left after 40:23 it's been sampled and shared we have over 30 of these freezers in a 40:28 special building that's actually a category 5 hurricane proof building 40:33 we sit in jacksonville florida which is susceptible to hurricanes but 40:38 um this building is very secure in terms of this its structure and also 40:45 the um uh the electrical supply for these freezers is on 40:51 the generator backed back up it says city-based 40:56 electricity but in the event that there's power outage there's um a generator that actually powers the 41:02 hospital as well as our freezer room so these are high priority areas that are kept uh with uh 41:09 um you know electricity each freezer costs about uh ten thousand dollars the type of activities 41:16 that the brain bank does we acquire tissue we also try to acquire medical records on the 41:22 all the cases where we get brain tissue this is a collaborative effort with the next of kin 41:28 um because we cannot ask for those medical records that we don't have the authority to do that the family has to 41:34 do this and so they go to the um the physicians are involved in the care 41:40 of that patient and ask for medical records to be sent they're either sent as hard copies or 41:45 they're sent by fax sometimes we get flash drives that have the medical 41:51 records sometimes they're sent through other other electronic means but 41:57 we then use that those medical records are linked um to the report so that 42:05 if if individuals want to do clinical pathologic studies they have access to medical information on the patients as 42:12 well as the pathology and then the genetics and the histo histopathologic 42:17 findings of in those brains we generate a uh we do i mentioned we've showed you we do 42:23 histology and initial chemistry on all cases we generate a diagnostic report we use microsoft word for that report the 42:30 report then uh is saved in in the word format and and a copy of that report is sent to the 42:36 family and to the referring physician i mentioned we send copies of the report 42:42 to the pathologist and to the next of kin we have a database and we use microsoft access for this 42:47 and then we we store the hard copy actually the hard copies of all the medical records are stored in 42:54 that in that campus support facility we call it the bunker we generate about 43:00 somewhere between 200 and 300 diagnostic reports per year um and 43:06 this is at up to 2020 where we stand in terms of reports 43:11 you see you can see that initially we're generating you know around 200 reports 43:17 and it's and then we've kind of moved up in the range of 300 and there's kind of an aberration in 2020 where we had 43:24 uh over 400 uh brains and diagnostic reports were generated 43:29 and one of the reasons that we think that we've had this bump is because of covet 19. i would just 43:35 mention that our brain bank we do a lot of work on human material but we also 43:41 serve research labs that are doing animal models of degenerative diseases 43:46 and then we share a brain bank is not a savings bank we think we think of it as a checking account money goes in but 43:54 money goes out so we bring in brains but we also share brains we give brain samples to a number 44:00 of uh labs and you can see the this is incomplete information obviously for this year but we and we've 44:08 been we share anywhere from um 500 to 44:13 almost 2 000 brain samples per year and the samples go for a variety of studies they 44:19 end up being part of really important genetic discoveries of 44:26 disorders like alzheimer's lieu by dementia and psp this is an example of some very large multi-center studies 44:33 looking at the genetics of of psp lewy body dementia and alzheimer's 44:39 using the resources from our brain bank in addition to other brain banks but in fact 44:45 in some of these studies especially studies that are focused on psp the our brain bank is the major 44:51 contributor of the samples that are involved in those next generation 44:58 genetic type studies i just want to conclude by thanking you for allowing me 45:04 to participate in this event and [Music] to let you know know a little bit more 45:10 about the brain bank here at mayo clinic that's been supported for many years by cure psp 45:16 and more recently with the rainwater charitable foundation and um have a great night 45:22 thank you everyone for being with us tonight and and a big thank you to dr dixon for his presentation and all the 45:28 information he shared with us today um as we're going through the show and through the event i realized we're 45:34 sharing a lot of information with you and i wish we could talk a lot more about many aspects of the information we 45:39 share with you but um we are only have 90 minutes and and we must continue but feel free to reach out to me directly at 45:47 diaz curepsp.org or to our info curepsp.org email 45:54 if you have any questions and if anything that you've seen tonight struck your curiosity and you want to 46:00 learn more about all the different aspects of the this this very very important program 46:05 so ano another reminder that whatever you give will help qpsp in our brain banking initiative our organization rely 46:12 on the dedication and passion of our staff volunteers and board members as you've seen tonight already we're all in 46:19 this together and together we can raise awareness and raise the funds needed to help those battling brain diseases so 46:26 back at you bobby oh wow kristoff i mean we learned so much from dr dixon i mean 46:32 kind of diving into the science and also the storage of how you know this this this brain bank works i mean the cost of 46:38 freezers alone ten thousand and uh that they have 30 to maintain the collection 46:44 of thousands of brain samples i mean think about that i mean they call it the bunker i mean that's 300 000 just to 46:50 store these samples and as you can imagine these freezers need to be replaced and powered and all of that but 46:56 we can help with your donations here this evening let's do this we can continue to do this and a reminder that 47:03 we have a curious cure psp that does reimburse for these brain donations a 47:08 gift of 750 really can help enable one family to donate that brain that goes into that 47:14 brain bank and then helps us provide uh that research so now everyone please just uh pull out your phone we've got 47:21 two things that i need want you to do with this um so get out open your text message uh type in four one four four 47:28 four and then type cure psp hit send boom and then uh i mean you could click the donate button up there but uh you're 47:34 on your phone anyways get in there make that donation make that 750 or more donation and we're gonna send that uh 47:41 beautiful warm cure psp blanket out to you and uh i have some very very exciting news uh one of our board 47:47 members everett cook helped us take us almost to that 70 level friends with 68 47:53 000 don't forget about that match that we have and we're gonna do this we are this close away from doing that so ever thank 47:59 you so much as well as jeff friedman former board member currently hiking now 48:04 uh this came in through the chat he said i've come down off the mountain to donate seven hundred and fifty dollars 48:10 to be a part of the tonight to help provide uh additional an additional brain donation and you can do that join 48:17 uh these amazing people let's do this and uh friends we're we're getting there the donations keep going up eileen lisa 48:23 frank amy oh this is so so so good just uh keep going on there and i just went 48:28 through the silent auction there's some great items in there there's some jewelry um some handmade crafted items 48:33 that you can't find anywhere else as well as that napa sonoma and uh broadway 48:39 i mean get out there check these things out and uh make that donation make a purchase and help us with this brain 48:44 research as well as the brain banks i mean this is uh this is an exciting night and and to see this all come 48:50 together and that's the collaboration that's the access that's the awareness and uh that's us helping us to find that 48:56 cure so uh thank you friends keep keep donating uh keep giving and keep being a part of this just revolutionary research 49:04 and you are you are a true contributor of this when you make that donation so keep giving bid in that silent auction 49:11 and uh kristoff uh this is going to be really neat we have a very very special person so uh let's uh let's find out who 49:17 that is you're right bobby so next uh it looks like amy cow has joined us from the west 49:23 coast and and she's uh like us courageous to join live and this exciting even today 49:29 um so i just want to thank you and mika dr cao for her continued support she 49:35 presented to our 2016 san francisco family conference and is also from the 49:40 past has been funded by cure psp so dr tagaw joined us from the university of california in san francisco she's an 49:47 associate professor of neurology there dr gao clinical expect expertise sorry 49:53 includes the diagnosis and treatment of alzheimer's disease vascular dementia and frontal temporal lobe degeneration 50:00 her basic science laboratory studies how age stress and other factor affect protein homeostasis and contributes to 50:07 sporadic and familial neurodegenerative disorder she has received the paul g allen family 50:13 foundation distinguished investigator award in neurogenerative diseases and the glenn award for research in the 50:20 biological mechanisms of aging dr gao will be talking to us about how 50:26 brain donation has impacted and enabled our research and we're looking forward to our presentation 50:32 thank you for being with us dr gao and hopefully tech is working and we're looking forward to your 50:38 presentation thank you so much christoph it's great to be here thank you so much for the invitation i definitely want to 50:46 thank cure psp um for having me here tonight as well as for the generous support of my research program in the 50:52 past i wish this were in person though and because it's not i just want to do a 50:58 quick shout out and hello to my friends at cure psp david kemp jeff friedman larry golby amy branch 51:06 everett cook all these people that um i wish i could be catching up with now in person but 51:11 remote is better than nothing um so cure psp is a wonderful organization um it's really made a huge 51:19 and positive impact on the basic science research and also the movement towards therapeutics for these 51:25 diseases i'm a physician and a scientist and so my job to tonight is to tell you about 51:32 how brain banks activities and tissues have actually directly and positively impacted 51:39 um basic science research into diseases like cure psp excuse me like psp cbd 51:45 alzheimer's disease other telepathies um so if i could get my slides up that 51:51 would be terrific great okay so i wanted to start off by sort of 51:57 explaining what we kind of do in lab but from a very very broad perspective which is sort of how you organize this sort of 52:04 idea this big human research endeavor um human disease research endeavor and this 52:09 is what i like to call the benevolence cycle of human disease research but this is actually um a cycle that i first 52:16 borrowed learned about and borrowed from another um physician scientist named charlotte sumner 52:21 so what happens is that somebody has to present with a condition it could be a headache or it could be a rash and then 52:27 that condition has to be described by a physician or a you know an observer 52:33 and then more affected persons can be identified cohorts of these affected individuals 52:39 can be gathered and then causes can be identified so it could be exposures to 52:45 toxins or allergies um and then once those causes identified you can sort of 52:51 understand the disease mechanisms find biomarkers for example a fever in an infection 52:58 and then the molecules can be targeted for therapeutics once that's done you can develop treatments and then if 53:04 you're really really lucky you can develop preventions um or cures 53:09 um so this is the a cycle that sort of works for everything we study um in um 53:17 sort of human disease research aging is not a disease but it's something it's a biological process we try and understand 53:23 but all these other examples in the center of the screen um have been part of this um cycle and in fact 53:30 neurodegenerative diseases like psp absolutely have been too um 53:35 it's taken a long time to get through this cycle um the first individual with alzheimer's disease was actually 53:41 described over 100 years ago um that condition had to be described and then we had to go through all the way to this 53:47 part and we're just now getting to under better understanding disease mechanisms and biomarkers 53:54 so um there are why is it taking so long right and why don't we have cures yet 54:00 well there are really some special challenges in neurodegenerative disease research because these are brain disorders and the brain is kind of 54:07 locked away in a box we can't we can't really see the brain like we can the skin let's say and we can't hear the 54:14 brain like we can the heart and we can't measure the output of the brain like we can for the kidneys um so it's really 54:20 locked away in addition the brain does tons of things it helps us talk it helps us walk it helps us you know perform 54:26 music it helps us do research and so um there's so many 54:31 functions that we really have to understand the brain in a very complex way 54:37 these diseases have taken a long time just to understand the symptoms and that's because the brain and its functions and outputs are so complicated 54:45 and aging affects the brain and it's been hard to distinguish what's normal aging from what's 54:52 pathological aging of the brain we are finally now understanding the basic science of these diseases but it's 55:00 still really hard to find biomarkers ways to sort of measure um brain outputs um and so 55:07 in my lab we also study um tauropathies and in fact um over the last few years 55:12 we've discovered a new genetic risk factor for psp and tauopathies and i bring this up because the punchline is 55:18 is that a lot of the advances that we made really will depend on brain banks because here you know this is just the 55:25 type of um flow flow diagram that scientists like to explain so tsc use this gene and we 55:30 had all kinds of data to support ts tsc one as a genetic risk factor for psp we 55:37 had human genetics we had um clinical cohorts we had tsc cell and animal 55:44 models um and so we were so proud we worked really hard for three four years we wrote up a paper we submitted it to our 55:51 journal um and what did they ask for they asked for data from um human 55:58 pathology and so this is where dennis dixon and the cure psp brain bank swooped in like 56:04 superheroes and actually provided us tissue from individuals who carried a 56:10 particular genetic variant in tsc1 and we were able to show that 56:15 what we had predicted from all these animal cell genetic um markers was actually true in 56:21 human tissue as well and this is the data um it does it's not meaningful um tonight but just to show you you know i 56:28 contacted dennis literally four weeks later he sent me the tissue and um three weeks later we 56:34 had this data and we're sending the paper back um later uh probably later 56:39 this week or next week so we've got this benevolent cycle of human 56:44 disease research and guess what we needed the brain bank for the conditions to be described we needed brain banks 56:50 for more affected individuals to be identified in order to organize the cohorts we needed brain banks and then 56:57 in order to figure out the causes um uh and identify them brain banks and now 57:04 in particular illustrated hopefully with my own work um the brain bank has helped with understanding of disease mechanisms 57:10 and biomarkers and so with that i just want to thank you all for um your attention um cure 57:17 psp again for all their support the rainwater tau consortium um and then of 57:22 course dennis dixon and his um his colleague michael at the mayo clinic thanks again 57:28 so dr cow tell me tell me you know when this team comes together to unlock this you know what is that like working with a group like this 57:36 yeah this huge team of um friends and collaborators and it's you know it's just like someone said earlier um 57:43 teamwork is dreamwork it's it's much more fun to work collaboratively um and it makes this it accelerates the pace of 57:49 discovery in science so yeah the more the merrier nice thank you dr cal what an honor to 57:56 have you join with us and thank you for so much information and you're right teamwork dreamwork that's it 58:04 excellent well kristoff we have some more information we have an infographic from 58:09 tonight to show where the research is being done with the brains uh for the mayo from the mayoral clinic in 58:14 jacksonville florida tell us a little bit more about this before we really dive in 58:20 sure sure that before i dive in i just want to thank again dr gao for our presentation i know that there's been 58:26 some some personal thank you also in the chat uh so uh the community thanks you 58:32 any gal for all the work you're doing and and thanks for the kind word and and and for your continued support uh in all 58:39 the organizations that enable those those collaborations so so we do have this infographic it's a 58:44 it's a simple way to showcase uh the international importance of brain banks in general and myoclinic in particular 58:51 so it's it's just a minute and we'll queue it up now and and i'll see you right after 59:00 neuroscientists at mayo clinics campus in florida are leaders in the discovery of new genes biomarkers and therapeutic 59:07 targets for brain diseases their work is made possible through mayo clinics brain bank and its director dr 59:14 dennis dixon cure psp is proud to support the brain donations program 59:25 [Music] 59:42 [Music] 59:51 the mayo clinic brain bank and the cure psp brain donation program empower researchers at leading academic 59:58 institutions in the united states and internationally [Music] 1:00:04 since 2016 the mayo clinic brain bank under dr dixon's leadership has provided 1:00:09 close to 7 000 brain samples to hundreds of scientists and research teams around the world 1:00:15 this has led to hundreds of publications and a greater understanding of the biological mechanisms involved in psp 1:00:22 msa and cbd and also alzheimer's disease 1:00:28 [Music] on behalf of cure psp and its community 1:00:34 thank you for your support 1:00:43 wow wow dr diaz i mean that i mean that really goes to show i mean how i mean 1:00:48 that's nationwide coming together and really trying to tap on so many different uh points of research and 1:00:54 really bringing it together i mean bringing the best minds to really help fight this uh these brain diseases 1:01:01 absolutely and um as you can see from the video you know we showcased a few places that receive tissue from the 1:01:06 brain bank and uh we uh pinpoint some of the names of the great 1:01:12 techniques that are enabled by those tissue and we'll discuss this a bit more later but um based on dr dixon presentation 1:01:19 and some of the information shared with me uh from from the beginning of the brain bank uh jacksonville they've 1:01:25 distributed close to 10 000 samples uh in most centers uh in the us and also in 1:01:31 south america and europe asia and australia and and basically most of the leading 1:01:37 academic and research centers that focus on understanding the mechanism in neurodegenerative diseases have at some 1:01:43 point obtain enabling samples from the brain bank so 1:01:49 before we we move on to a few other testimony we wanted to share another infographic with everyone tonight 1:01:56 so we created a sketch to explain the most important steps and value of brain donation uh once uh i i will take you 1:02:04 through it for a couple minutes um and i realize there's a lot of information on this particular schematic uh we will 1:02:10 share it on our website in a few weeks and and you you can take the time to to review it uh and also um ask us any 1:02:18 question as i mentioned before always feel free to contact us so the title i think is it's critical uh 1:02:24 brain donation paves the path to new therapeutics and treatments and and we keep on insisting on this today because 1:02:31 not only collaboration uh to ext to to process and utilize those very uh useful 1:02:38 and precious donations are important for science but are really important and critical to uh 1:02:44 prove and advance potential new therapeutics and treatment so i'll take you uh quickly uh through 1:02:51 through this schematic and we'll start by the left side of it as you see there are three three aspects of this uh this 1:02:57 drawing on the left side it really is about the people and the take home here is 1:03:03 that we are here to help the families that are interested in in exploring brain 1:03:08 donation um the mayo clinic has a great team and a brain bank coordinator uh rochelle pie 1:03:16 harwood that is a crucial in the success of of the of the the program 1:03:21 and so not only uh you have access to us for help we do have on our website uh 1:03:27 different forms an informational packet that will really tell you all what you 1:03:32 need to do in order to put in place a donation but uh 1:03:38 as i said the take-home message here is plan ahead and ask all the questions with those are here to help you like 1:03:44 like us in the maya clinic and also make sure that amongst yourself for a given family family members loved 1:03:51 ones and friends that we really discuss all the aspects sometimes someone affected by a disease wants to to is 1:03:58 very excited in making the donation and and participating to research for those 1:04:03 incurable diseases but then the family has also needs to align on on this particular 1:04:09 decision uh if we move now to the center of the schematic of this uh drawing that we we 1:04:15 represented here the moment of truth and to me the moment of truth really represents two aspects of that journey 1:04:21 is is a moment where um the loved one passes and there's a quick 1:04:27 set of of processes that have to be put in place to enable um the the donation that was a wish of 1:04:34 the family and the the my clinic brand bank has a set of 1:04:39 processes that they help the the particular family wherever they are in the u.s to be able to to process 1:04:47 the donation and to make sure that the brain makes it to the to the by the clinic 1:04:52 quickly and and and the tissue are treated with care the second part of the moment of truth 1:04:57 really is what you see in the in the lower part of the center section of the drawing is that you see the brain there in the microscope uh it 1:05:04 takes time and you'll see that in a testimony in a bit the family will talk about the timeline around from donation 1:05:11 to receiving this neuropathology report it takes time because it's it's a a complex uh 1:05:17 and scientifically led and based process to actually process the brain find the region that have the 1:05:23 information that it that will help the scientists in the family understand what was the cause of death and what was the 1:05:30 disease so once this report is done it's then shared with the family and um i'll i'll 1:05:36 finish on that section before i describe the science by telling you that the the closure that that this report brings to 1:05:43 family is quite unbelievable and and i've had the chance to speak to many families 1:05:49 and realize how how important it is for them to really have this disability to understand what happened to their loved 1:05:55 one and finally it's a little small there but if you move on to the right side in science there's a neuron here 1:06:01 and i mentioned there's one billion of them it's an estimation but one billion neuron and what's often not discussed is 1:06:07 that there's one trillion cells that support neural neural functions if you think of the brain uh it's often 1:06:14 mentioned that it's a it's the last frontier but it is it's it's uh of the brains are of unmatched complexity and 1:06:21 the only way uh we can understand diseases is by studying uh human brains 1:06:26 um and the last part of the the science aspect is that you know we focus directly on psp cbd and msa the 1:06:33 myoclinic brain bank also works on many many other neurodegenerative diseases and the point is some of the fundamental 1:06:40 mechanisms that can be studied with breakthrough techniques and i mentioned a few down there cryo-em or single cell 1:06:46 sequencing they're things that didn't exist five ten years ago and now that this technique exists exists they can be 1:06:52 applied to all this brain donation that people have made for many years ago and continue to do and and we can then 1:06:59 advance discovery based on new technology so i'll stop now for for uh with my 1:07:04 description here and i'll pass back the the microphone to bobby but before we do uh you can 1:07:10 contact us if you have any question about this drawing uh and we'll be more than happy to take you through it uh so 1:07:16 thank you again for your attention and bobby back at you wow my billions of neurons are like oh 1:07:23 this is i mean this is what i mean it's really all about my friends it's it's the people that are behind this it's the 1:07:30 you know the families the brain donors that actually provide those samples to give the people that are the researchers 1:07:37 the doctors to really dive in and examine and identify where that you know what you know where 1:07:43 that that disease lives and then to really dissect it go in and and accelerate the research and finding the 1:07:50 cure of these neurodegenerative diseases i mean it's happening and think about 1:07:56 that acceleration like dr cow said i mean these uh you know these new findings you 1:08:01 know just five and ten years old i mean if cure psp wasn't here and we weren't getting uh the dona the brain donations 1:08:07 into the brain bank i mean we could be 20 30 40 50 years behind where we are now 1:08:13 it's your donations it's your generosity it's your engagement uh that are accelerating this so the more you can 1:08:19 give the faster we can accelerate this the more brains we can have than the deeper we can build that brain bank 1:08:25 and it's really up to you so friends let's uh let's do this and let's make this happen and i am taking another look 1:08:31 at the thermometer oh my gosh we are just about 70 percent there i know we've had the donations slow a little bit but 1:08:37 if everyone that's watching would you please send this out to your network 1:08:43 your facebook friends your instagram friends be like look i'm part of cure psp i love them and i love everything 1:08:48 that they're doing because they could save my life and they could save yours and uh invite them to make a donation uh 1:08:55 if you consider making a deeper donation this is that time and we still have those dollars from dr segeliano who came 1:09:02 up in the chat and she's like the generosity is amazing so friends let's do this let's get to that goal and let's 1:09:08 uh let's push ahead and let's uh let's accelerate that and uh it's uh it's that 750 donation that really really 1:09:15 reimburses that cost of a donations wouldn't you consider making that donation right now 750 just think about 1:09:22 that span over a year yeah that's not that much it's like 60 bucks a month i mean i spend more on 1:09:29 these things than um we're asking right now so if you'd like to make what we call a 1:09:34 latte legacy donation this is a great time uh to go ahead and do that make that 750 donation 1:09:41 and i want to uh thank everyone i just want to pop in and thank a couple donors that popped up here on my radar uh mike 1:09:48 uh dickie raphael jeff garvey linda spears diane larson thank you thank you 1:09:53 so much uh for joining us and being part of this thank you for um giving and having your donation matched uh so uh 1:10:00 friends let's hear directly uh from individuals who have been through this 1:10:05 process we're gonna hear from six people that have directly dealt with this very very difficult decision and learn about 1:10:11 the steps to enable a brain donation with their loved ones and they'll tell us about their experience and how this 1:10:17 process is and just kind of how it's been illustrated but it's you know hearing directly uh from uh you know 1:10:23 from these individuals to know the firsthand benefits of a brain donation so please welcome our friends 1:10:33 my name is uh jocelyn gervais finney and my late husband pierre gervais 1:10:39 um is is my loved one my name is paul freeman 1:10:46 my wife eva freeman had psp i'm i'm dawn sproul 1:10:52 my wife kathleen sproul passed away with psp about one month ago 1:10:59 and i am bethany sproul lebron i am her youngest daughter i am nancy stagliano and my 1:11:07 father vincent stagliano passed away from psp my name is solna brodie 1:11:13 and i'm the sister of dr lawrence brody and i've been 1:11:18 a supporter of qpsp for a number of years [Music] 1:11:27 when my wife was sick uh i was actually at a first time was at a family com conference 1:11:34 and dr dennis dixon was one of the speakers at the conference and mentioned the 1:11:39 brain donation program and also the brain autopsy and confirming 1:11:45 you know what they can do with confirming whether the person did have psp or had something 1:11:51 else or had a combination of complications i found out about the brain donation program while i 1:11:59 was helping my brother who had multiple different diagnoses 1:12:05 from many doctors mayo clinic came highly 1:12:10 recommended and dr dennis dixon um 1:12:15 was renowned a scientist and all the doctors said donate to that 1:12:21 brain bank and so that's why we donated to the brain bank at the mayo clinic as 1:12:27 a neuroscientist it for me is a critical thing for us to 1:12:34 work in every way possible to to understand the disease better so that we can treat it and we can cure it 1:12:40 and so certainly from the perspective of a daughter a neuroscientist uh this this area and 1:12:48 this organization is is really of high interest to me and then working in drug discovery and 1:12:53 biotechnology and working at a company called neuron 23 where we think about 1:12:59 and are trying to drug diseases like parkinson's thinking about diseases like psp 1:13:04 you realize the value of brain tissue and the scarcity of model 1:13:10 systems to to learn about diseases like psp and so so i think it's 1:13:16 a critical mission for the organization and for the field to 1:13:21 to get samples bringing them 1:13:32 my mother was not comfortable at all talking about um really the you know 1:13:38 the finality of what her reality was going to be in the next you know a couple of years ahead um but the thought 1:13:45 that she could do something you know um after she took her last breath that could help 1:13:52 her own family her own grandchildren her great-grandchildren down the road or other families and other grandmothers 1:13:59 that was really important to her care really wanted to be a part of the solution um you know he did recognize 1:14:06 that his um his illness was incurable that it was terminal 1:14:12 but so what what could we do what could he do um moving forward he wanted to be part 1:14:18 of the solution and you know even though the solution wasn't going to impact him uh he felt like moving forward hopefully 1:14:25 within [Music] the generation of his children there may be 1:14:31 some progress and he might contribute to that in some very small way 1:14:40 my brother had no hesitations considering donating his brain i was a bit hesitant 1:14:48 um i didn't know much about brain donation but i knew about tissue donation 1:14:54 and so um once i found out more about the brain donation program i was all in there are 1:15:02 people that are hesitant i i'd say just take it easy take it one step at a time 1:15:08 and and you'll get there but but the benefits far outweigh any hesitations 1:15:14 [Music] well we we had a discussion and when i 1:15:21 knew that she was passing i was in contact with the people at mayo 1:15:27 in jacksonville spoke with them they coordinated 1:15:33 with the hospital for the rain harvesting and 1:15:39 other than that filling out some forms we really didn't have it was not a very difficult process 1:15:46 ultimately it was the mayo clinic that had put us in touch with a private 1:15:53 pathologist who made arrangements with ultimate funeral 1:15:58 home to be able to go and take care of 1:16:03 harvesting [Music] 1:16:08 within six hours after her passing we get this email and we're like we did it you know we got it you know because 1:16:16 everything went flawlessly and you know it it takes a lot of moving parts it 1:16:22 involved us the funeral director the you know the pathologist hospice may general like all of these things and everything 1:16:28 aligned beautifully and it was honestly just it was almost perfect you know it 1:16:33 was a cause of celebration yeah in the family you know yeah we were instead of grieving we were celebrating we it gave 1:16:40 us it gave us light in a time that otherwise would have been a very hard day and it was like you know what 1:16:46 she's still doing something right now she's still you know giving to others 1:16:56 when after a few months we received the autopsy report 1:17:01 oh it was it was it was such a relief 1:17:07 to receive a diagnosis and to finally get closure it just meant so much to me 1:17:13 it was important it was important to pierre it was important to me and to our 1:17:19 children if you know since we had gone this far and made that commitment to really see 1:17:25 it through to the end [Music] so as a result i think it took about three months before we actually got the 1:17:32 final um the final diagnosis it just reinforces 1:17:38 that uh these the need the need for the um for the 1:17:44 autopsy to confirm because i i think that it 1:17:49 also provides the neurologists i guess there's 1:17:55 research regarding the diagnosis of the disease that can happen as a result of these 1:18:03 autopsy the help is that you at least have some closure 1:18:09 and you know what it was and to be able to know especially 1:18:15 you know for for my children whether they're something that 1:18:20 makes them genetically susceptible much more than psp which is 1:18:28 mostly not genetic it it can be familial 1:18:33 it is mostly non-familial but to find out or know whether you had 1:18:39 a disease even in the background that may have been familial that they need to be on the lookout for 1:18:47 is is huge and that's the only way you can find that 1:18:53 out is with the brain authors 1:19:00 i highly recommend the brain donation program the advice i'd offer is do it now it's a gift that 1:19:08 keeps on giving number one just do it we're not going to learn fast enough about this disease without 1:19:15 without access to good quality samples without understanding the patient journey 1:19:22 data about how the patients that have donated these samples 1:19:28 have lived what their disease looked like and and then getting those you know getting 1:19:34 that information the data the samples in the conversations with their clinicians their neurologists into the 1:19:41 right hands into investigators hands so that we can build an understanding of 1:19:46 the pathophysiology of psp we need all of that and we need all that to happen now we need we need to get 1:19:53 this work done as soon as possible so there are examples in neuroscience where we say time is brain 1:20:00 it's a very relevant saying here as well this is a very rapidly progressing disease 1:20:06 and we we don't have any time to waste and so i want to thank you for doing this and 1:20:11 allowing me to participate in it because i know that initiatives like this will help us find 1:20:16 a cure [Music] 1:20:34 well friends there you have it right from right from the mouths of family members who've been through this 1:20:40 process and and as touching as these stories are i mean you think about this the the 1:20:46 conversation is not an easy one to have with those loved ones that might be facing uh that end of life decision or 1:20:52 that final chapter that they have but this is a way that these family members these donors 1:20:58 are able to you know extend their legacy i mean this is a way to continue to be a part of the 1:21:04 solution and and friends won't you continue to be a part of the solution now we are just 1:21:09 about 70 to our goal and and i have a really really strong feeling in my heart that we're going to achieve that here 1:21:15 this evening there might be someone that's going to come in here just at the final second and push us over the top 1:21:20 but it's uh it's individuals like uh jocelyn and and dr nancy st leonano 1:21:26 whose match is still out there so if you want to have your donations double continue to give um or paul or solna or 1:21:31 bethany or don you know thinking back upon that loved one who lived you know that life will live but now was able to 1:21:38 again continue to keep that legacy continue to help uh be able to be a part 1:21:44 of that cure because you know friends you are a part of the solution you're collaborating with us here this evening 1:21:49 collaboration plus access equals treatments treatments which then can 1:21:54 turn into a cure so let's keep doing this there's lots of moving parts and you were a big part of this so let's 1:22:00 keep doing this and we can celebrate these lives and help them to then continue continue to live on and your 1:22:08 gift is a gift that keeps on giving because once that that ultimate gift of the brain donation is made it then goes 1:22:14 right into the researchers hands and and can help so many so many you know help our children help our grandchildren our 1:22:20 great great grandchildren this is generations that we are serving here right now so let's continue to do let's 1:22:27 do this this is confirmation this is collaboration the access is right now 1:22:32 and to donate we want you to do this and as you heard directly from dr nancy cigliano i mean she's not only just a 1:22:40 neuroscientist who really wants to help find this cure as fast as she can but it's also a daughter whose father you 1:22:47 know had had to suffer through this but she's like you know what i want my dad to live on i want him to do some great 1:22:53 work and and not only you know is is you know working through that donation but also putting her dollars behind this to 1:22:59 accelerate that and knows the value of these brain bank samples so let's do this friends now whether you've given 1:23:06 you know maybe a 50 donation to help with their educational package or can make that contribution of a hundred 1:23:12 dollars or like our friend judith you might have seen her name pop up in the donation uh level it said she gave 26 1:23:19 bucks that's not just a single gift that is a monthly gift so friends if you'd 1:23:24 like to make that 750 dollar a year gift right now and and put that on you 1:23:30 know give you know a portion monthly this is that chance to do it you can do that you can provide that grant provide 1:23:36 that sponsorship for that family to reimburse them for that brain donation and and and you can do that you can extend 1:23:42 that over an entire year's time so friends continue to give and and you know maybe you are working on your you 1:23:49 know kind of your legacy giving opportunity why not consider putting cure psp in that last will and testament 1:23:55 and and really again not only leaving that brain but also leaving those dollars you know behind to just keep 1:24:01 pushing it forward keep doing that and then also that 1500 donation uh help us 1:24:07 to support that genome sequencing and you saw that how it all works together i still can't even comprehend it my my 1:24:14 neurons are just banging against each other and like what did i just watch but we don't need to know the science but we 1:24:20 need to know that your donations has are really really making a difference here this evening so whether it's in 1:24:26 our direct fund the need fund the cure right now or friends heading over to our silent auction don't forget about that 1:24:32 that auction button hit that there's some great items that are in there continue to do this continue to be a 1:24:38 part of this continue to be a part of cure psp and and let's give so let's 1:24:43 keep going get that word out there remember to use the hashtags share this because it is also awareness that this 1:24:49 is a thing yes brain donations are a thing and we need them we need your help whether it's you know with dollars 1:24:56 or with you know donations let's let's do that right through here and friends you can share the website you can share 1:25:02 the facebook page you can share what we are doing together here tonight we have almost raised over 70 1:25:07 000 together and i have to thank everyone for continuing to give continue to be a 1:25:13 part of this it's the resources it's the research and it's the cures that you are part of this i mean kristoff i know you 1:25:20 know you're being diving into this and knowing how much good work that this is doing in the value that these donations 1:25:27 are i mean you've got to be so so excited so uh kristoff i mean this is great but we're so close to the to the 1:25:33 goal let's keep working hard because i know you're working hard every day yes we all are and and i know yeah i 1:25:39 know we're 30 from the goal um and and we are kind of getting close to to that 1:25:44 90 minutes that i told you we're gonna spend together uh it would be it would be really great if we were passing uh 1:25:50 the 70 000 but but uh i'm amazed at the generosity that we've gathered today already and and uh and you know thank 1:25:58 you again bobby for for bringing your energy into into this evening so again we're 30 short from our 1:26:04 goal but uh what i can tell you in this virtual world as i you know me and the team and everyone here i will be working 1:26:12 hard in the coming weeks uh to try to hit our hundred thousand dollar goal this is one of the silver lining of 1:26:18 virtual environment you know we've created a lot of videos and a lot of engagement and we'll keep them pushing 1:26:24 um many many weeks after tonight's event so i just want to thank you are we close to 1:26:31 a close to the end of our of our evening there and so i want to thank you all so much for joining uh there's so many 1:26:37 people who contributed to the success of this event uh the entire staff is here on the chat and on different uh portal 1:26:44 here to make sure everything is smooth so hopefully it was you know you could send us some some feedback i know there'll be a email sent to everyone uh 1:26:52 right right in a you know shortly after this even so you have more information uh i want to spend just a couple seconds 1:26:58 uh and and extend a heartfelt thank you uh to to the people that that contributed to this testimonial video uh 1:27:05 jocelyn jervis finney paul freeman who was a it was a great supporter at cure psp and and i consider 1:27:12 consider him a good friend also salner brody bethany sproul lebron and and don sproul 1:27:18 and others uh to me this testimonial really um summarized a lot of what we've 1:27:24 been talking about tonight from the importance of of coming up to a decision to to the 1:27:30 what i mentioned around solace and closure once uh the families get the report to the importance of of enabling 1:27:38 science and research so i thought this was all deeply moving um and and i want to thank everyone for 1:27:44 that so so that's all from me uh thank you for joining us again i'm christoph diaz vice president of uh scientific 1:27:51 affair at cure psp and it's been a pleasure and an honor uh to to be with you with you all tonight uh and so 1:27:58 the closing remark will go to bobby so back at your body thank you all well dr diaz what an honor to share this 1:28:05 virtual event with you and in honor to be a part of this mission and to be an honor to be a part of cure psp and i i 1:28:12 have to say a very very special thank you to carissa dunn who stepped up and said you know i'm going to give monthly 1:28:18 62.50 a month think about that i mean we 1:28:23 dropped that you know at a fast food restaurant and she said i'm gonna make the decision and i'm gonna give monthly 1:28:29 and i'm gonna donate uh because there are families out there that this this this little bit of dollars could be 1:28:36 holding them back from making this very vital donation and uh your donations i have to thank 1:28:41 you now friends yes we're just a little bit shy of the goal but you know what's exciting we have almost fully funded 1:28:47 100 grants going back to family so so let's celebrate that i mean this this is 1:28:53 amazing of all of us coming together because here at the beginning of the night it was zero and here we're at the 1:28:59 end of our event and it's 70 000 or more and the giving will continue to keep 1:29:04 going so continue to be a part of this and uh even the smallest donation you can be a part of this effort to offer 1:29:10 support resources uh to the lives of so many in the neurodegeneration uh community we also welcome larger 1:29:17 gifts and if there isn't a level that i have asked at or you want to give it an anonymous gift please please please uh 1:29:23 reach out email text however it is uh but this is your chance to be a part of this oh oh don't forget don't forget our 1:29:30 auction we've got our auction is uh up there and uh friends uh that's gonna be open until 7pm eastern time 1:29:38 that's right the silent auction will be open until 7pm eastern time uh is when that's going to close don't forget 1:29:44 silent auction silent auction the computer might have glitched is going to be open until 7 pm on sunday 1:29:51 7 00 p.m eastern time so lots of time share that out there let's get some going in there and friends 1:29:57 keep keep giving and being a part of this so i want to thank all of you for collaborating with us helping us to 1:30:03 provide that access and helping us create these treatments this research these resources and all of this thank 1:30:09 you thank you thank you again my name is bobby truly inspired to be here with you 1:30:14 this evening to help us cure psp all right have a great evening we'll see you all soon all right thanks again 1:30:21 congratulations everyone keep giving let's do this let's do it all right we'll see y'all later bye everyone 1:31:10 do [Music] 1:31:24 you 59:15 NOW PLAYING Rese0:12 [Music] 0:46 [Music] 1:08 [Music] cure psp is the foundation for prime of life 1:15 neurodegeneration a spectrum of incapacitating 1:22 and incurable diseases with debilitating motor 1:28 cognitive behavioral and emotional symptoms these afflictions often strike in middle age 1:35 when people have careers family responsibilities 1:40 and active lives so they include progressive super 1:45 nuclear policy which is also known as psp cortico basal degeneration or 1:52 cbd multiple system atrophy msa chronic traumatic encephalopathy 2:01 cte and others the mission of cure psp 2:07 is care consciousness and cure for devastating 2:12 crime of life neurodegenerative diseases my name is bob driver 2:19 and i am [Music] 2:32 i am edna montano and my husband nigel suffered from progressive supernuclear 2:38 palsy psp my name is linda phillips and i have psp gracias for a company 2:50 thank you [Music] 3:07 hello everyone uh and welcome to synapse 21 the cure psp brain bank benefit 3:14 um i hope that everyone can hear us i hope that everyone enjoyed 3:19 this very powerful and very touching presentation and start of this even today um 3:26 i'm just going to pause for a few seconds to make sure that you can hear my voice um you we have our 3:33 team on the chat uh if you can't hear my voice so maybe you can leave a message in the chat but 3:39 hopefully the music we played uh for a few minutes and this introduction allows you to 3:44 to figure out all the the the technical issue and and the challenge of those new platform that we have to utilize in 3:50 these uh difficult time all right so i'll get started uh welcome to this virtual event to support a critical 3:57 aspect of research towards a cure thank you all for joining us this evening i'm 4:02 kristof diaz and this is my pleasure to welcome you all live from our headquarters in new york city i'm the 4:09 vice president of scientific affair at cure psp and with me tonight is our masters of ceremony bobby d bobby welcome to the 4:17 show oh hello there everyone my name is bobby dean i'm with inspire hearts fundraising and i am so honored to be a 4:23 part of this event that's not only doing life-saving research but providing resources for parents family and 4:29 healthcare professionals and that's where you as our community gets to come together as a family to help not only 4:35 it's it's it's care it's cure and its conscience and then just as you've seen in the video but yes 4:41 it's gonna be an amazing night and with your help and your support and your donations uh we're gonna be one step 4:46 closer to uh curing psp and all of these crazy brain diseases that are with us so uh at any time of the night you do feel 4:53 so inspired you can text in cure psp to 41444 and make that 4:59 donation but make sure you check out those silent auction items and we've got some great things that are going to be over there and we'll tell you a little 5:04 bit more about that later but uh i think it's time kristoff let's get it started an honor to be here with you all today 5:10 virtually i'm looking forward to meeting you all in person when we can in the meantime we've gathered uh for you and 5:16 uh we've gathered here for an important cause and i'm grateful that you all joined um again hopefully you can hear 5:23 us uh feel free to interact and say hello in the chat let us know uh how you're doing if you 5:28 have any issues and for example tell us where you're joining us from uh we'd love to hear from you uh bobby back at 5:35 you speaking of the chat i mean we have some friends that are joining us literally 5:41 nationwide we have friends in dallas uh grand rapids uh rochester minnesota a male location as well a friend from 5:47 california jacksonville florida another mayo location there's some amazing work 5:52 that's going on all the way through there so if you are joining us uh and uh might be using one of those other 5:59 browsers uh we'll suggest you go over to chrome um if you can't hear me um there is a speaker icon on the lower left side 6:06 uh over there and you can hit that button right there to make sure that you hear that but make sure your window is 6:11 in full screen mode too uh if you can't see the chat on the right side there's uh four little uh buttons right there 6:16 just click that and you see the chat pop up there it is look at that it's so great to see some friends uh that are 6:22 here uh joining us here it is gonna be a nationwide i mean maybe a worldwide event because here we are with cure psp 6:29 we're all working together to make this happen and and help provide it so uh if you do happen to uh close this with the 6:35 window don't worry don't worry uh you can hit the back button and then just click the link again and uh that email 6:41 will be sent and you'll be back no big deal and then this event is going to be available on the cure pspu youtube page 6:47 in just a few weeks and we'll email everybody when it's ready um there's some several buttons at the top of the 6:52 screen and we have the register learn more about the brain bank calendar as well as our silent auction uh there's 6:58 some great items that are in there of some handmade items some pieces of art some quilts some other things uh that 7:04 really uh represent how grassroots that this is and how cool would it be to own 7:09 uh one of these pieces at the same time uh to help us raise a lot of money because uh remember friends it's not 7:14 about what you're getting this evening it's about what you're giving that's right giving back to cure psp for that 7:20 research uh the resources as well as helping the our families uh that are helping to provide those brain donations 7:27 uh but uh yeah it's uh if you just click around with your uh your you know your mouse open a new window um you can hit 7:32 right click and then open a new tab and that's all kind of over there um if you're like me i have lots of screens all over and uh 7:39 you can see everything that's going on but uh yes kristoff i think we have some amazing sponsors we're going to be 7:45 thinking here yeah so i'll move on to that before i give you a bit more information about today's uh and and 7:51 your psp i would like to thank a bunch of sponsors that have helped us support this event our brain donation fund which 7:58 we'll tell you a lot about today and cure psp in general so i want to thank you all stripes biohaven 8:04 bristol meyer squibb lighter d foundation a loon back power over parkinson and a broady foundation so 8:12 thank you all for the sponsor uh without whom uh we could not run this even tonight so um 8:18 i'll i'll tell you uh oh one more person a special person i want to thank uh is dr sagliano i will hear about her today 8:25 uh she'll participate to a patient uh testimonial with with other fantastic speakers there but i want to thank her 8:32 uh for a generous donation and her participation to today's event so we're looking forward to spending 8:38 this 90 minutes with you we worked hard on this virtual celebration and fundraiser to support the cure psp brain 8:43 donation program it's operated in collaboration with the myoclinic brain bank in jacksonville 8:48 florida the myoclinics brain bank is a vital resource to research and scientists because it provides tissue 8:55 sample that are essential for discovery as you learned today brain donation as an extremely are an extremely important 9:01 resource a brand donation represents the ultimate gift to science and most importantly for 9:07 the development of new cures and treatments for all neurodegenerative disorders we'll underline this 9:12 throughout the evening the valuable samples obtained by a brain bank are not just important to advance our basic 9:18 understanding of thought of tough diseases such as psp which is the goal of research those 9:24 dedicated to the life sciences need brain donation and the resources to support brain banking so they can 9:29 advance cures this is our ultimate goal and the center of cure psp mission 9:35 another important and critical role of the myoclinic brain bank after a brain is donated the family of the deceased 9:42 receives a neuropathology report that will do its best to confirm the 9:47 diagnosis of the loved one as you will learn today from our testimonial the service provide closure and solace to 9:53 family and that's very important to the community bobby will talk more about that but i'd like to mention uh that for many years 10:00 cure psp has reimbursed some of the costs associated with brain donation your support today will enable this 10:06 reimbursement for many years to come thanks to you when a family wants to participate in this program they will be 10:12 able to so before bringing some of our guests and important voices of our brain bank 10:18 initiative let me tell you a little bit more about your psp for over 30 years cure psp has been the 10:24 foundation for prime of life in road regeneration cure psp is a leading non-profit advocacy organization 10:30 focusing on progressive supreme criminal policy psp cortical basel degeneration 10:35 cbd and multiple system atrophy or msa at cure psp we thrive to provide support 10:42 to patients their families friends and caregiver we also focus on better understanding the biological causes of 10:48 neurodegeneration and importantly in advancing projects that represent hope for new treatment and cure 10:55 cure psp is a grassroots charitable organization let me give you a compelling example of what i mean by 11:01 that since the beginning of the pandemic 11 000 individuals have donated to cure 11:06 psp your generosity is our lifeline and i'd like to thank the thousands of donors 11:11 and emphasize that working for a foundation supported by real people from all around the world makes our team very 11:17 proud your psp is also the main source of information and assistance for patients family caregivers researchers physician 11:25 and healthcare professional another example since 2019 we've provided more than 1500 printed 11:31 information packets to families starting their battle with these difficult journeys another and one last example before i 11:38 give the microphone back to bobby is that since 2017 thanks to the cherry libyan quality of life fund we've helped 11:45 more than a hundred family pay for in-home care speaking of the cherry lebanon quality of life fund cure psp 11:51 has another event on july 14 supporting this initiative mark your calendar and visit our website for more information 11:58 at psp.org back to the purpose of today's gathering 12:03 pure psp brain tissue donation program started in 1998 and has been collaborating with the myoclinic from 12:10 the start since then under the leadership of the myoclinics director dr dennis dixon 12:17 thousands of scientists from around the world have advanced our knowledge of brain diseases by donating a brain to the brain bank a 12:24 scientific legacy is created by donating a brand to a brand bank families are enabled a family enables 12:32 studies that would otherwise be impossible to conduct ultimately you bring to life possible breakthrough 12:39 passing the button back to bobby kristoff that's absolutely right ultimately you our friends our 12:46 volunteers our donors are the ones that bring that life to these possible breakthroughs and and we couldn't have 12:51 done it without you and many people don't know that when a patient passes away that there's costs associated with 12:57 donating their brains neither cure psp nor the mayo clinic imposes a charge for any part of the brain donation process 13:04 however charges are typically imposed by the technician performing the steps to donate the brain and this cost usually 13:09 ranges between 500 and 2 000 and it's the responsibility of the family but at 13:14 cure psp we recognize the expenses that related to brain donation can be prohibitive for some families and 13:21 they're like yeah i want to but i just can't but many years ago thanks to generous donors like you we created the 13:28 cure psp brain tissue donation fund and this has allowed cure psp to provide 13:33 financial assistance to hundreds of families that pledged for a brain donation your generosity today will help 13:40 us to replenish this fund so we can continue to keep on reimbursing families for many years to come now friends we 13:47 have a big goal ahead of us today it's a hundred thousand dollars i know this is ambitious but i know together we all can 13:54 work together to make this happen and with your assistance we can achieve it and more we're not gonna stop if we 13:59 hit a hundred thousand and we are off to an amazing start already we have well over a hundred donors look at 107 donors 14:06 oh my gosh frank and amy and eric and kevin and linda thank you thank you thank you we have some amazing 14:11 volunteers that are watching us as well fran and mary jack phelps rick thank you this is so so 14:18 awesome and friends yes as you see dr nancy stegliano's name up on the screen 14:25 she is providing a matching gift here this evening a matching gift but that's a challenge gift and we are challenging 14:32 you our friends that are watching here this evening to help us match forty thousand dollars so with dr stegliano 14:39 and you forty thousand dollars could come together to get eighty thousand 000 and that means we're just 20 000 away 14:45 from that hundred thousand dollar goal so friends right now if you can give and text cure psp to four one four four four 14:53 and you can uh make that donation you can also click at the top uh there's a big donate button right 14:59 there big and red you can't miss it and cure psp red but you can make that donation right there but uh yes we have 15:05 some more donations coming in oh my gosh look at that friends we're over halfway there that is so so great frederick 15:10 thank you elizabeth thank you barbara alice and friends let's do this let's match this and here let's do this now dr 15:17 stegliano lost her father to psp and personally understands the importance of research and a family's journey through 15:24 nero neuro degradation uh she's a leader and an entrepreneur in biotechnology and her 15:30 support is a recognition of the importance of brain donations and brain banks and that's what you're here to 15:36 fund so please friends if you can make that donation we'll be matching that and we'll work together because we have our 15:42 researchers we have our scientists we have our doctors and we also have our families and we have you joining 15:48 together in collaboration uh and uh for tonight i i'd like to just throw this number out there uh for anyone that 15:55 donates 750 which signifies uh the reimbursement grant that we provide back 16:00 to the families that make their donation we're going to throw in a cure psp because hope matters blankets so you can 16:06 wrap yourselves in that you can feel that warm hug that the cure psp family provides and tonight again it's so easy 16:12 to give on that mobile phone you can make a gift of any amount so please please get that smartphone out open a new text message so easy and type in 16:20 there the two area of the text message four one four four four and then message 16:25 cure psp pick send and then you'll get a text message and response and with that link you can fulfill your pledge um 16:32 right there and you can give one time uh you could give monthly uh so many other great ways that you can give a right 16:37 there super super super easy and if you need any assistance just email us events 16:42 at curepsp.org or click the donate button on the top of your screen super easy and 16:48 those of you to donate tonight are going to be over on the chat well i mean look at all the names that are coming up tamara lynn patricia and 16:55 no gift is too small and also no gift is too large so if you want to give multiple times this evening you can go 17:02 ahead and make that happen but yes uh and and like i said you know mike thank you judah thank you eileen thank you 17:09 this is great um we also have our great silent auction items uh that are available as well too now to check out 17:15 the uh items just click that auction button it's right there next to the donate button uh and you can see all 17:20 these great items that we have we have many items including a painting from bra braca as well uh turner who has had psp 17:27 rocket turner uh get in there on that painting jewelry life coaching sessions and now that we can travel again thank 17:33 you they were shooting fireworks off in new york to celebrate the lifting of the restrictions we also have a three night 17:40 wine experience in sonoma as well as a broadway vacation for two to right here 17:46 in new york city and friends i know that you want to come here get back to broadway broadway lights are going to be brighter than ever and uh we couldn't uh 17:54 couldn't couldn't invite you even more deeper than into this beautiful city well friends before we get started um we 18:00 want to see you if you eat audience get social show us your pictures uh with your snack boxes um as well as your 18:06 party and place boxes on twitter and instagram use that hashtag hear psp and 18:12 hashtag synapse synapse21 and now uh friends uh we're gonna get started kristoff back to you thanks 18:18 bobby i hope uh bobby's energy is convincing everyone uh to to give to cure psp i'm very excited 18:25 to be working with you on this even bobby so our first speaker tonight is dr amy romell 18:30 she joined the rainwater charitable foundation in 2018 where she guides medical research programming with the 18:36 primary focus on the rain water price program and other public outreach efforts 18:42 dr romel has been featured a featured speaker at numerous public events such as a tedx san diego she has participated 18:49 in several community programs and advisory effort including those associated with the cancer moonshot and 18:55 the world economic forum in addition she continues to be an avid supporter and 19:00 volunteer for stem education outreach and science advocacy i talked to amy rommel i talked to her 19:06 many times we collaborate frequently but before this uh this even evening i wanted to to have her sense of how she 19:11 would summarize her talk and her presentation and she said to me this very simple and efficient statement 19:17 collaboration plus access equal treatments and this is something that we hope 19:22 we can feature today and that everybody can remember that access to tissue and 19:27 collaboration between all scientists can truly advance treatments and and we're here to support this program tonight so 19:32 thank you for being with us dr romell and welcome to our virtual benefit thank you kristoff and the team at cure 19:38 psp for this opportunity to share with your community we have been working on together 19:44 for those of you who we have not yet met the rainwater charitable foundation was created in the early 1990s by renowned 19:51 private equity investor and philanthropist richard rainwater initially the foundation supported k-12 19:58 education and other worthy endeavors but in 2009 richer was diagnosed with 20:03 progressive supernuclear palsy which launched the foundation's research funding to accelerate the development of 20:10 new diagnostics and treatments for psp and other towel-related neurodegenerative disorders 20:17 during that time the foundation gathered scientists whose mission was to collaborate share data and resources and 20:23 work with urgency to better understand this disease so treatments could be generated 20:29 that group became known as the tau consortium which now consists of just over 48 lead researchers as well as 20:36 dozens of post-docs and students and other organizations like cure psp 20:41 with more than 145 million dollars invested to date the rainwater charitable foundation has helped advance 20:48 eight treatments into human trials and has dozens others in the pipeline within our network of collaborative researchers 20:55 during our time trying to get effective treatments across the finish line we learned a few things 21:00 the most important thing we learned was access is a problem specifically access to high quality 21:08 tissue and associated clinical and genetic data from our bio banks remains 21:13 a barrier to research and drug discovery productivity especially with respect to 21:18 rare diseases like our focus psp if researchers or pharmaceutical 21:23 companies cannot access or are delayed in accessing these tissues and information it is near impossible for 21:30 them to initiate or maintain a research or drug discovery program in that disease 21:36 biobanking infrastructure has critical impact on the pace and effectiveness of drug discovery 21:42 our biobanks need our help so they can expand this needed access and avoid any 21:48 bottlenecks causing delays in collaboration and partnership with cure psp and now also the aft we are 21:56 supporting an initiative to establish a federated network of four biobanks with 22:01 an upgraded data management solution and a centralized research-facing tissue access portal that will allow 22:08 researchers to assess tissue inventories online and request tissue through a 22:13 seamless web-based system the four biobanks that have come together to collaborate for this 22:20 initiative include the icann school of medicine at mount sinai led by dr john crairy 22:26 boston university school of medicine led by dr ann mckee the mayo clinic in jacksonville florida 22:33 led by dr dennis dixon who you will hear from later this evening and the university of california san francisco 22:39 led by doctors william seeley and leah grimberg right now we are three to four years out 22:45 from this initiative being completed when all four biobanks will be fully upgraded and linked within this unified 22:52 network with each partner organization that comes on board and with each donor that 22:58 supports we accelerate this timeline to bring these four bio banks together and 23:03 bring their systems online to expand this much needed access 23:08 ultimately this will get the needed effective treatments for those that suffer from psp across the finish line 23:15 faster all of us collaborating and increasing this needed access will equal more 23:22 treatments in the pipeline collaboration plus access equals 23:27 treatments thank you for being here with us we can do this together 23:33 thank you dr romell for sharing your perspective and an update on the biobanking initiative that we just 23:39 recently launched in collaboration with your organization and also the ftd 23:44 we are honored to have the rainwater charitable foundation be part of this program tonight when richard rainwater 23:50 was diagnosed with psp in 2009 he put together many collaborative programs to advance science and research we've 23:57 worked together for many years and more recently we co-funded research projects that are advancing new cures for 24:03 taopathy which are talpati tau being the protein that is involved in psp and cbd and many other 24:10 neurodegenerative disorders including alzheimer so i i seek your psp in our 24:16 collaboration with the renoir charitable foundation as the entity that is bringing the patient voice uh to 24:22 the rainwater foundation's important and transformational work so let's let's continue with the night 24:28 and uh i'll pass the microphone to bobby now that's right like dr almost said we can do this together we can do this 24:34 together and it's collaboration plus access equals treatments and you are 24:40 collaborators you are helping us with this research and you are helping us to fund this great brain brain bank as well 24:47 as grants uh for these families that are so i mean they make the ultimate uh donation i mean it's that brain that 24:54 we're able to research and find you know that you know and work towards that cure and uh these collaborations are 25:00 absolutely critical in advance these discoveries to slow or cure neuro 25:06 uh neurodegeneration now it's this is not just an in an older you know as you 25:11 you know age uh type of disease i mean there's people that are in the prime of their life 50 55 60 65 that are 25:18 developing these diseases and they don't know where they come from and that's where your donations are able to help 25:24 here tonight this is this is research and today right now right now you have that opportunity to be a part of this 25:30 and collaborate with this and collaborate with a gift and as a reminder remember with the generosity of 25:36 dr stegliano all gifts today are going to be matched up to 40 000 now friends 25:41 if you look at that thermometer really fast oh my gosh we are continue continue 25:46 to rise we are 64 of the way there but let's make it a hundred a hundred and ten percent uh we can do this um i wanna 25:54 thank uh amy any branch one of our board members can thank you thank you for donating uh for one of our grants and uh 26:00 because you've donated 750 or more you receive a blanket yes let's get some more friends to do that as well of a 26:07 speaker that's coming up a little bit later uh dr cow amy cal has also just donated as well and nick 26:14 oh look at this nick brother of dr stegliano steps up and says you know 26:19 what i want to provide a grant for a family to help cover those expenses of the donation that's awesome that i mean 26:25 that that like i said it's family it's everyone coming together and this is uh 26:31 this is this is epic this is this is we're going to continue to do this so friends keep going keep giving we want 26:37 to thank mike de graafid uh matthew mccannon tamara panachi and jeff ring 26:43 thank you thank you as well as a special thanks to our cure psp board of directors amy again thank you for your 26:49 help everett cook and bill and eileen mcfarland for your donations as well as our former board member dr jeff friedman 26:56 who's currently hiking to raise funds for cure psp he's climbing a mountain 27:01 and we're climbing a mountain here this evening and friends we keep getting closer because you are helping us to match those donations from dr stegliano 27:09 and we're going to do this together i know we are so friends don't forget about that silent auction that we have there's some great great items in there 27:15 click the auction button i know i wish we all had could have that live auction and i could do that auction talk that 2500 out of 35 45 55 no it's a silent 27:23 auction so shh click the button click and win so we uh want to bring this over to uh 27:28 uh one person uh carol laughlin who's benefited from the brain bank and mail 27:33 carol recently lost her husband to psp and he donated his brain to the clinic and this 27:40 is their story have a watch my husband was initially diagnosed with cortical basal degeneration or cbd 27:47 and that was subsequently changed to psp so the autopsy was very important to us 27:54 to know what he actually had which it turned out was cbd my husband was 28:00 hesitant to participate in the program but as we interacted with the people in our 28:06 support group and learned what their plans were and why he changed his mind 28:12 this was about a year before he passed away and 28:17 in preparation for it i called the mayo clinic in jacksonville florida 28:23 and got information from them about the paperwork and the process 28:28 and began to get things ready for uh for the time 28:33 when it came the people at the mayo clinic in jacksonville were very very helpful gave me the information that i 28:39 needed paperwork that i needed to complete and 28:44 the information regarding the deaners in the area who could do the brain harvesting 28:50 and so i completed all the paperwork got everything lined up worked with a 28:56 funeral home so that we had the facility available when he did pass to be able to 29:02 do the harvesting it's very important to make sure that the funeral home has has that ability or 29:08 has another facility they can use it was very important to us my family and and 29:14 myself because we had conflicting diagnoses he was diagnosed originally with cbd 29:20 and then subsequently with psp so we didn't really know what he had and there were a lot of 29:27 questions the process started with completing the paperwork for them 29:33 submitting that to them and then arranging for someone to do the 29:39 the harvesting of the brain when the time came and 29:44 we went ahead and contacted what they call a deener in in the area 29:50 and set that all up in advance it is very very comforting to know 29:56 that teres brain tissue has been sent all over the world 30:02 where they're doing research and that ultimately this will help other people 30:08 it didn't help him but it will help other people and there's great comfort and peace to that 30:13 we also provided the autopsy to his neurologist 30:18 in hopes that it will provide him with key information in making accurate diagnoses going forward 30:25 cure psp was instrumental in helping us get through 30:30 this three and a half years of illness with my husband the support group was 30:38 just priceless and the information that we learned through participation in the in 30:44 the support group helped us navigate this journey 30:50 [Music] 30:58 well friends they say that a picture is worth a thousand words and with that video i 31:03 mean that's that that's worth a million right there and this video it said it all i mean however there's still so 31:10 many questions when it comes to these many brain diseases and as carol said that ultimate donation 31:16 is helping so many beyond the passing of their loved ones and many of us know how huge of an issue 31:22 this brain disease is and many of you have had friends and loved ones that are affected or will be affected and we 31:29 understand the staggering weight facing this generation and here's some numbers i just want to talk to some numbers with 31:34 you and uh these are some dollar figures now i'd like to see and if there's anyone out there that like to make that 31:40 inspirational donation and uh making a donation of fifteen hundred dollars these fifteen hundred dollars supports 31:47 the genome sequencing that has the potential to be an important tool to guide therapeutic intervention to brain 31:54 disease in the future i mean you think of how many neurons and synapses are going on in the brain at any time and 32:00 then there's one little piece of code in there that gets flipped and that can tran you know transition into that brain 32:05 disease but by working together and looking at these genome sequencing they can go in and they can fix that and 32:11 they're trying to find this cure and with your help we can do this and as we said kind of that magic number that we 32:16 have this evening 750 dollars fully funds one bro brain donation and you get 32:22 a blanket from that even get that nice warm hug so i mean who who doesn't want to be a part of that and you know i want 32:27 to thank so many that have already given at that 750 level um i really have to thank bill mcfarland and his wife eileen 32:35 for stepping up and saying yes we are going to fund uh one of those grants for one of those brain donations so i want 32:40 to thank you so much thank you for being the chair of and all the great work that you both are providing here at cure psp 32:45 i mean what a great leadership stepping up and doing that now friends you might not be able to make that gift at that 750 level it's okay because they say 32:53 teamwork makes the dream work and we are all part of this team we are all part of this family and maybe you can make a 32:59 donation of 100 or more and and this is a great way to sponsor the ask the scientist webinars 33:05 to educate other neuroscientists on the latest research i mean that's that's what it's all about it's these research 33:12 and these resources for healthcare professionals because there's so many questions and yeah because they are 33:18 neuroscientists they they i mean they know they don't know it all and they come to the experts at cure psp that are 33:24 doing the research and are able to help provide that and and open source i mean it's like look here this is what we have 33:31 and this is how we can help because together we're all fighting these brain diseases and maybe friends uh you want to make a 33:37 50 donation and what this 50 donation helps us to send educational uh packets 33:42 to people that want to learn more about the brain notation process i mean this is a scary thing especially with the 33:48 doctors like have you considered a brain donation with you know from your loved one and you kind of might take a step 33:54 back and be like what what what are you talking about but to have these informational packets to share with them 33:59 and and to say look look this is how you're able to help save lives you know beyond this great life that you've lived 34:06 and and you can your legacy can can live on i mean it's it's so very very amazing 34:11 so friends won't you be a part of the future of neurodegenerative research please please 34:17 right now this is that time uh type in cure psp to four one four four four and 34:23 click in and and be a part of that or hit that big red donate button and help us be a part of that i just wanna take oh my gosh friends we're 67 percent of 34:29 the way there we are so close to helping funding this and and we're doing it with your generosity this evening so thank 34:35 you thank you again to all of our donors that are out there mary jo deanne teresa kathy look at that carissa oh my gosh so 34:43 many donors that are there so uh this uh the generosity is inspiring and it's uh it's also electric and uh let's uh let's 34:50 see some more electricity uh kristoff uh i think we've uh have a really really awesome video coming up here so why did 34:56 she introduce us thank you bobby uh before i introduce uh everyone here i just wanted to uh we're 35:03 getting a lot of live information here being fed to us during this fundraising it's very exciting um 35:09 so i just want to thank uh personally and on behalf of cure psp everett cook as also a board member who just donated 35:15 i believe twenty five hundred dollar two thousand and five hundred dollar i thank you so much everett uh for your support 35:21 in general and for for your support tonight um and bobby we'll we'll keep on tracking 35:27 the donation and and thank the people so uh we've already mentioned our next speaker many times tonight and dr dennis 35:34 dixon uh we also should mention his team and his work uh how dr dixon and his team 35:41 oversee the operation of the brain bank at the myoclinic in jacksonville so dr dixon is a world-renowned 35:47 neuroscientist he's a thought leader and experienced researcher he's an expert neuropathologist and has advanced a 35:54 field in diagnosis of many diseases including psp cbd msa but also ftd als 36:01 and cte dr dickson also works in alzheimer's research and is a brain bank that has a 36:07 one of the biggest collection in the united states so dr dixon will will talk a little bit about the brain bank its 36:14 operation and its important role in research so i hope you enjoyed the video uh and uh and we'll meet you and we'll 36:20 meet right after that thank you okay my name is dennis dixon i'm sort of pathology and neuropathology at 36:27 mayo clinic uh in jacksonville florida and i'm going to give you a little bit of information 36:32 about our brain bank for neurodegenerative disorders um 36:38 so the although mayo clinic is in in jacksonville florida we in fact receive 36:44 brains from all 50 states and the number of brains that we get it depends to some extent on the population 36:51 so we get a lot of brains from florida and actually a lot from california and 36:57 states like texas a very populous state but we actually get it from from all states of the united states 37:04 and this initiative is was initially 37:10 established for psp brain donations but subsequently it's been expanded to other 37:15 disorders such as lewy body dementia and multiple system atrophy as well 37:20 what when we get a brain we we uh have to uh do some evaluations uh 37:26 and uh in order to understand what the disease is and then uh 37:33 to be able to use that uh that brain tissue for research we need to know exactly what the disorder is 37:39 so upon receiving the brain and usually the half of the brain is fixed in 37:46 preservative formaldehyde and the other half is frozen usually in a very cold freezer like a minus 80 freezer 37:54 and um the the fixed half undergoes a systematic uh dissection and 38:00 sampling and those samples then are used for histologic studies 38:06 we do this in a what we call a brain cutting conference in which the clinical information 38:12 for the patient is summarized before we dissect the brain and 38:18 and then the there's discussion of the case discussion of the findings and how it 38:24 matches or it doesn't match the the um the clinical information and this 38:30 green county conference is attended by research trainees um and students graduate 38:37 level students so once the tissue is dissected the the tissue is embedded in 38:42 paraffin wax so this is a section of brain tissue it's actually a midbrain section and then the these 38:49 uh embedded sections are cut with a very sharp uh blade it's called a micro tone 38:55 um the sections that are mounted on glass slides and then there they go through a series of staining processes 39:02 that generates a set of slides on a case for multiple different brain regions all stained with 39:07 a histologic stain that re those slides are then evaluated with a microscope and from the 39:13 microscopic evaluation we generate a diagnostic report and we collect 39:19 quantitative parameters on the brain that can be used for research research we then send a copy of the report and a 39:27 letter to the next of ken is uh summarizing the findings in late terms 39:32 so in the since the brain bank was established in 1998 uh and this is this isn't uh quite up to 39:39 date but we've we've generated over 4 000 diagnostic reports that we've sent 39:44 to family members or and to the uh or to the clinician involved in the care of 39:50 the patient the brain bank has over 6 000 uh frozen fix specimens and uh over six 39:58 thousand frozen specimens the frozen tissue as i mentioned stored 40:04 in a very cold freezer they're sometimes called ultra freezers because they're it's it's minus 80 degrees centigrade 40:11 um and these are these are examples of the types of freezers each freezer holds about 40:17 somewhere between 50 and 100 brains depending upon how much of the tissue is left after 40:23 it's been sampled and shared we have over 30 of these freezers in a 40:28 special building that's actually a category 5 hurricane proof building 40:33 we sit in jacksonville florida which is susceptible to hurricanes but 40:38 um this building is very secure in terms of this its structure and also 40:45 the um uh the electrical supply for these freezers is on 40:51 the generator backed back up it says city-based 40:56 electricity but in the event that there's power outage there's um a generator that actually powers the 41:02 hospital as well as our freezer room so these are high priority areas that are kept uh with uh 41:09 um you know electricity each freezer costs about uh ten thousand dollars the type of activities 41:16 that the brain bank does we acquire tissue we also try to acquire medical records on the 41:22 all the cases where we get brain tissue this is a collaborative effort with the next of kin 41:28 um because we cannot ask for those medical records that we don't have the authority to do that the family has to 41:34 do this and so they go to the um the physicians are involved in the care 41:40 of that patient and ask for medical records to be sent they're either sent as hard copies or 41:45 they're sent by fax sometimes we get flash drives that have the medical 41:51 records sometimes they're sent through other other electronic means but 41:57 we then use that those medical records are linked um to the report so that 42:05 if if individuals want to do clinical pathologic studies they have access to medical information on the patients as 42:12 well as the pathology and then the genetics and the histo histopathologic 42:17 findings of in those brains we generate a uh we do i mentioned we've showed you we do 42:23 histology and initial chemistry on all cases we generate a diagnostic report we use microsoft word for that report the 42:30 report then uh is saved in in the word format and and a copy of that report is sent to the 42:36 family and to the referring physician i mentioned we send copies of the report 42:42 to the pathologist and to the next of kin we have a database and we use microsoft access for this 42:47 and then we we store the hard copy actually the hard copies of all the medical records are stored in 42:54 that in that campus support facility we call it the bunker we generate about 43:00 somewhere between 200 and 300 diagnostic reports per year um and 43:06 this is at up to 2020 where we stand in terms of reports 43:11 you see you can see that initially we're generating you know around 200 reports 43:17 and it's and then we've kind of moved up in the range of 300 and there's kind of an aberration in 2020 where we had 43:24 uh over 400 uh brains and diagnostic reports were generated 43:29 and one of the reasons that we think that we've had this bump is because of covet 19. i would just 43:35 mention that our brain bank we do a lot of work on human material but we also 43:41 serve research labs that are doing animal models of degenerative diseases 43:46 and then we share a brain bank is not a savings bank we think we think of it as a checking account money goes in but 43:54 money goes out so we bring in brains but we also share brains we give brain samples to a number 44:00 of uh labs and you can see the this is incomplete information obviously for this year but we and we've 44:08 been we share anywhere from um 500 to 44:13 almost 2 000 brain samples per year and the samples go for a variety of studies they 44:19 end up being part of really important genetic discoveries of 44:26 disorders like alzheimer's lieu by dementia and psp this is an example of some very large multi-center studies 44:33 looking at the genetics of of psp lewy body dementia and alzheimer's 44:39 using the resources from our brain bank in addition to other brain banks but in fact 44:45 in some of these studies especially studies that are focused on psp the our brain bank is the major 44:51 contributor of the samples that are involved in those next generation 44:58 genetic type studies i just want to conclude by thanking you for allowing me 45:04 to participate in this event and [Music] to let you know know a little bit more 45:10 about the brain bank here at mayo clinic that's been supported for many years by cure psp 45:16 and more recently with the rainwater charitable foundation and um have a great night 45:22 thank you everyone for being with us tonight and and a big thank you to dr dixon for his presentation and all the 45:28 information he shared with us today um as we're going through the show and through the event i realized we're 45:34 sharing a lot of information with you and i wish we could talk a lot more about many aspects of the information we 45:39 share with you but um we are only have 90 minutes and and we must continue but feel free to reach out to me directly at 45:47 diaz curepsp.org or to our info curepsp.org email 45:54 if you have any questions and if anything that you've seen tonight struck your curiosity and you want to 46:00 learn more about all the different aspects of the this this very very important program 46:05 so ano another reminder that whatever you give will help qpsp in our brain banking initiative our organization rely 46:12 on the dedication and passion of our staff volunteers and board members as you've seen tonight already we're all in 46:19 this together and together we can raise awareness and raise the funds needed to help those battling brain diseases so 46:26 back at you bobby oh wow kristoff i mean we learned so much from dr dixon i mean 46:32 kind of diving into the science and also the storage of how you know this this this brain bank works i mean the cost of 46:38 freezers alone ten thousand and uh that they have 30 to maintain the collection 46:44 of thousands of brain samples i mean think about that i mean they call it the bunker i mean that's 300 000 just to 46:50 store these samples and as you can imagine these freezers need to be replaced and powered and all of that but 46:56 we can help with your donations here this evening let's do this we can continue to do this and a reminder that 47:03 we have a curious cure psp that does reimburse for these brain donations a 47:08 gift of 750 really can help enable one family to donate that brain that goes into that 47:14 brain bank and then helps us provide uh that research so now everyone please just uh pull out your phone we've got 47:21 two things that i need want you to do with this um so get out open your text message uh type in four one four four 47:28 four and then type cure psp hit send boom and then uh i mean you could click the donate button up there but uh you're 47:34 on your phone anyways get in there make that donation make that 750 or more donation and we're gonna send that uh 47:41 beautiful warm cure psp blanket out to you and uh i have some very very exciting news uh one of our board 47:47 members everett cook helped us take us almost to that 70 level friends with 68 47:53 000 don't forget about that match that we have and we're gonna do this we are this close away from doing that so ever thank 47:59 you so much as well as jeff friedman former board member currently hiking now 48:04 uh this came in through the chat he said i've come down off the mountain to donate seven hundred and fifty dollars 48:10 to be a part of the tonight to help provide uh additional an additional brain donation and you can do that join 48:17 uh these amazing people let's do this and uh friends we're we're getting there the donations keep going up eileen lisa 48:23 frank amy oh this is so so so good just uh keep going on there and i just went 48:28 through the silent auction there's some great items in there there's some jewelry um some handmade crafted items 48:33 that you can't find anywhere else as well as that napa sonoma and uh broadway 48:39 i mean get out there check these things out and uh make that donation make a purchase and help us with this brain 48:44 research as well as the brain banks i mean this is uh this is an exciting night and and to see this all come 48:50 together and that's the collaboration that's the access that's the awareness and uh that's us helping us to find that 48:56 cure so uh thank you friends keep keep donating uh keep giving and keep being a part of this just revolutionary research 49:04 and you are you are a true contributor of this when you make that donation so keep giving bid in that silent auction 49:11 and uh kristoff uh this is going to be really neat we have a very very special person so uh let's uh let's find out who 49:17 that is you're right bobby so next uh it looks like amy cow has joined us from the west 49:23 coast and and she's uh like us courageous to join live and this exciting even today 49:29 um so i just want to thank you and mika dr cao for her continued support she 49:35 presented to our 2016 san francisco family conference and is also from the 49:40 past has been funded by cure psp so dr tagaw joined us from the university of california in san francisco she's an 49:47 associate professor of neurology there dr gao clinical expect expertise sorry 49:53 includes the diagnosis and treatment of alzheimer's disease vascular dementia and frontal temporal lobe degeneration 50:00 her basic science laboratory studies how age stress and other factor affect protein homeostasis and contributes to 50:07 sporadic and familial neurodegenerative disorder she has received the paul g allen family 50:13 foundation distinguished investigator award in neurogenerative diseases and the glenn award for research in the 50:20 biological mechanisms of aging dr gao will be talking to us about how 50:26 brain donation has impacted and enabled our research and we're looking forward to our presentation 50:32 thank you for being with us dr gao and hopefully tech is working and we're looking forward to your 50:38 presentation thank you so much christoph it's great to be here thank you so much for the invitation i definitely want to 50:46 thank cure psp um for having me here tonight as well as for the generous support of my research program in the 50:52 past i wish this were in person though and because it's not i just want to do a 50:58 quick shout out and hello to my friends at cure psp david kemp jeff friedman larry golby amy branch 51:06 everett cook all these people that um i wish i could be catching up with now in person but 51:11 remote is better than nothing um so cure psp is a wonderful organization um it's really made a huge 51:19 and positive impact on the basic science research and also the movement towards therapeutics for these 51:25 diseases i'm a physician and a scientist and so my job to tonight is to tell you about 51:32 how brain banks activities and tissues have actually directly and positively impacted 51:39 um basic science research into diseases like cure psp excuse me like psp cbd 51:45 alzheimer's disease other telepathies um so if i could get my slides up that 51:51 would be terrific great okay so i wanted to start off by sort of 51:57 explaining what we kind of do in lab but from a very very broad perspective which is sort of how you organize this sort of 52:04 idea this big human research endeavor um human disease research endeavor and this 52:09 is what i like to call the benevolence cycle of human disease research but this is actually um a cycle that i first 52:16 borrowed learned about and borrowed from another um physician scientist named charlotte sumner 52:21 so what happens is that somebody has to present with a condition it could be a headache or it could be a rash and then 52:27 that condition has to be described by a physician or a you know an observer 52:33 and then more affected persons can be identified cohorts of these affected individuals 52:39 can be gathered and then causes can be identified so it could be exposures to 52:45 toxins or allergies um and then once those causes identified you can sort of 52:51 understand the disease mechanisms find biomarkers for example a fever in an infection 52:58 and then the molecules can be targeted for therapeutics once that's done you can develop treatments and then if 53:04 you're really really lucky you can develop preventions um or cures 53:09 um so this is the a cycle that sort of works for everything we study um in um 53:17 sort of human disease research aging is not a disease but it's something it's a biological process we try and understand 53:23 but all these other examples in the center of the screen um have been part of this um cycle and in fact 53:30 neurodegenerative diseases like psp absolutely have been too um 53:35 it's taken a long time to get through this cycle um the first individual with alzheimer's disease was actually 53:41 described over 100 years ago um that condition had to be described and then we had to go through all the way to this 53:47 part and we're just now getting to under better understanding disease mechanisms and biomarkers 53:54 so um there are why is it taking so long right and why don't we have cures yet 54:00 well there are really some special challenges in neurodegenerative disease research because these are brain disorders and the brain is kind of 54:07 locked away in a box we can't we can't really see the brain like we can the skin let's say and we can't hear the 54:14 brain like we can the heart and we can't measure the output of the brain like we can for the kidneys um so it's really 54:20 locked away in addition the brain does tons of things it helps us talk it helps us walk it helps us you know perform 54:26 music it helps us do research and so um there's so many 54:31 functions that we really have to understand the brain in a very complex way 54:37 these diseases have taken a long time just to understand the symptoms and that's because the brain and its functions and outputs are so complicated 54:45 and aging affects the brain and it's been hard to distinguish what's normal aging from what's 54:52 pathological aging of the brain we are finally now understanding the basic science of these diseases but it's 55:00 still really hard to find biomarkers ways to sort of measure um brain outputs um and so 55:07 in my lab we also study um tauropathies and in fact um over the last few years 55:12 we've discovered a new genetic risk factor for psp and tauopathies and i bring this up because the punchline is 55:18 is that a lot of the advances that we made really will depend on brain banks because here you know this is just the 55:25 type of um flow flow diagram that scientists like to explain so tsc use this gene and we 55:30 had all kinds of data to support ts tsc one as a genetic risk factor for psp we 55:37 had human genetics we had um clinical cohorts we had tsc cell and animal 55:44 models um and so we were so proud we worked really hard for three four years we wrote up a paper we submitted it to our 55:51 journal um and what did they ask for they asked for data from um human 55:58 pathology and so this is where dennis dixon and the cure psp brain bank swooped in like 56:04 superheroes and actually provided us tissue from individuals who carried a 56:10 particular genetic variant in tsc1 and we were able to show that 56:15 what we had predicted from all these animal cell genetic um markers was actually true in 56:21 human tissue as well and this is the data um it does it's not meaningful um tonight but just to show you you know i 56:28 contacted dennis literally four weeks later he sent me the tissue and um three weeks later we 56:34 had this data and we're sending the paper back um later uh probably later 56:39 this week or next week so we've got this benevolent cycle of human 56:44 disease research and guess what we needed the brain bank for the conditions to be described we needed brain banks 56:50 for more affected individuals to be identified in order to organize the cohorts we needed brain banks and then 56:57 in order to figure out the causes um uh and identify them brain banks and now 57:04 in particular illustrated hopefully with my own work um the brain bank has helped with understanding of disease mechanisms 57:10 and biomarkers and so with that i just want to thank you all for um your attention um cure 57:17 psp again for all their support the rainwater tau consortium um and then of 57:22 course dennis dixon and his um his colleague michael at the mayo clinic thanks again 57:28 so dr cow tell me tell me you know when this team comes together to unlock this you know what is that like working with a group like this 57:36 yeah this huge team of um friends and collaborators and it's you know it's just like someone said earlier um 57:43 teamwork is dreamwork it's it's much more fun to work collaboratively um and it makes this it accelerates the pace of 57:49 discovery in science so yeah the more the merrier nice thank you dr cal what an honor to 57:56 have you join with us and thank you for so much information and you're right teamwork dreamwork that's it 58:04 excellent well kristoff we have some more information we have an infographic from 58:09 tonight to show where the research is being done with the brains uh for the mayo from the mayoral clinic in 58:14 jacksonville florida tell us a little bit more about this before we really dive in 58:20 sure sure that before i dive in i just want to thank again dr gao for our presentation i know that there's been 58:26 some some personal thank you also in the chat uh so uh the community thanks you 58:32 any gal for all the work you're doing and and thanks for the kind word and and and for your continued support uh in all 58:39 the organizations that enable those those collaborations so so we do have this infographic it's a 58:44 it's a simple way to showcase uh the international importance of brain banks in general and myoclinic in particular 58:51 so it's it's just a minute and we'll queue it up now and and i'll see you right after 59:00 neuroscientists at mayo clinics campus in florida are leaders in the discovery of new genes biomarkers and therapeutic 59:07 targets for brain diseases their work is made possible through mayo clinics brain bank and its director dr 59:14 dennis dixon cure psp is proud to support the brain donations program 59:25 [Music] 59:42 [Music] 59:51 the mayo clinic brain bank and the cure psp brain donation program empower researchers at leading academic 59:58 institutions in the united states and internationally [Music] 1:00:04 since 2016 the mayo clinic brain bank under dr dixon's leadership has provided 1:00:09 close to 7 000 brain samples to hundreds of scientists and research teams around the world 1:00:15 this has led to hundreds of publications and a greater understanding of the biological mechanisms involved in psp 1:00:22 msa and cbd and also alzheimer's disease 1:00:28 [Music] on behalf of cure psp and its community 1:00:34 thank you for your support 1:00:43 wow wow dr diaz i mean that i mean that really goes to show i mean how i mean 1:00:48 that's nationwide coming together and really trying to tap on so many different uh points of research and 1:00:54 really bringing it together i mean bringing the best minds to really help fight this uh these brain diseases 1:01:01 absolutely and um as you can see from the video you know we showcased a few places that receive tissue from the 1:01:06 brain bank and uh we uh pinpoint some of the names of the great 1:01:12 techniques that are enabled by those tissue and we'll discuss this a bit more later but um based on dr dixon presentation 1:01:19 and some of the information shared with me uh from from the beginning of the brain bank uh jacksonville they've 1:01:25 distributed close to 10 000 samples uh in most centers uh in the us and also in 1:01:31 south america and europe asia and australia and and basically most of the leading 1:01:37 academic and research centers that focus on understanding the mechanism in neurodegenerative diseases have at some 1:01:43 point obtain enabling samples from the brain bank so 1:01:49 before we we move on to a few other testimony we wanted to share another infographic with everyone tonight 1:01:56 so we created a sketch to explain the most important steps and value of brain donation uh once uh i i will take you 1:02:04 through it for a couple minutes um and i realize there's a lot of information on this particular schematic uh we will 1:02:10 share it on our website in a few weeks and and you you can take the time to to review it uh and also um ask us any 1:02:18 question as i mentioned before always feel free to contact us so the title i think is it's critical uh 1:02:24 brain donation paves the path to new therapeutics and treatments and and we keep on insisting on this today because 1:02:31 not only collaboration uh to ext to to process and utilize those very uh useful 1:02:38 and precious donations are important for science but are really important and critical to uh 1:02:44 prove and advance potential new therapeutics and treatment so i'll take you uh quickly uh through 1:02:51 through this schematic and we'll start by the left side of it as you see there are three three aspects of this uh this 1:02:57 drawing on the left side it really is about the people and the take home here is 1:03:03 that we are here to help the families that are interested in in exploring brain 1:03:08 donation um the mayo clinic has a great team and a brain bank coordinator uh rochelle pie 1:03:16 harwood that is a crucial in the success of of the of the the program 1:03:21 and so not only uh you have access to us for help we do have on our website uh 1:03:27 different forms an informational packet that will really tell you all what you 1:03:32 need to do in order to put in place a donation but uh 1:03:38 as i said the take-home message here is plan ahead and ask all the questions with those are here to help you like 1:03:44 like us in the maya clinic and also make sure that amongst yourself for a given family family members loved 1:03:51 ones and friends that we really discuss all the aspects sometimes someone affected by a disease wants to to is 1:03:58 very excited in making the donation and and participating to research for those 1:04:03 incurable diseases but then the family has also needs to align on on this particular 1:04:09 decision uh if we move now to the center of the schematic of this uh drawing that we we 1:04:15 represented here the moment of truth and to me the moment of truth really represents two aspects of that journey 1:04:21 is is a moment where um the loved one passes and there's a quick 1:04:27 set of of processes that have to be put in place to enable um the the donation that was a wish of 1:04:34 the family and the the my clinic brand bank has a set of 1:04:39 processes that they help the the particular family wherever they are in the u.s to be able to to process 1:04:47 the donation and to make sure that the brain makes it to the to the by the clinic 1:04:52 quickly and and and the tissue are treated with care the second part of the moment of truth 1:04:57 really is what you see in the in the lower part of the center section of the drawing is that you see the brain there in the microscope uh it 1:05:04 takes time and you'll see that in a testimony in a bit the family will talk about the timeline around from donation 1:05:11 to receiving this neuropathology report it takes time because it's it's a a complex uh 1:05:17 and scientifically led and based process to actually process the brain find the region that have the 1:05:23 information that it that will help the scientists in the family understand what was the cause of death and what was the 1:05:30 disease so once this report is done it's then shared with the family and um i'll i'll 1:05:36 finish on that section before i describe the science by telling you that the the closure that that this report brings to 1:05:43 family is quite unbelievable and and i've had the chance to speak to many families 1:05:49 and realize how how important it is for them to really have this disability to understand what happened to their loved 1:05:55 one and finally it's a little small there but if you move on to the right side in science there's a neuron here 1:06:01 and i mentioned there's one billion of them it's an estimation but one billion neuron and what's often not discussed is 1:06:07 that there's one trillion cells that support neural neural functions if you think of the brain uh it's often 1:06:14 mentioned that it's a it's the last frontier but it is it's it's uh of the brains are of unmatched complexity and 1:06:21 the only way uh we can understand diseases is by studying uh human brains 1:06:26 um and the last part of the the science aspect is that you know we focus directly on psp cbd and msa the 1:06:33 myoclinic brain bank also works on many many other neurodegenerative diseases and the point is some of the fundamental 1:06:40 mechanisms that can be studied with breakthrough techniques and i mentioned a few down there cryo-em or single cell 1:06:46 sequencing they're things that didn't exist five ten years ago and now that this technique exists exists they can be 1:06:52 applied to all this brain donation that people have made for many years ago and continue to do and and we can then 1:06:59 advance discovery based on new technology so i'll stop now for for uh with my 1:07:04 description here and i'll pass back the the microphone to bobby but before we do uh you can 1:07:10 contact us if you have any question about this drawing uh and we'll be more than happy to take you through it uh so 1:07:16 thank you again for your attention and bobby back at you wow my billions of neurons are like oh 1:07:23 this is i mean this is what i mean it's really all about my friends it's it's the people that are behind this it's the 1:07:30 you know the families the brain donors that actually provide those samples to give the people that are the researchers 1:07:37 the doctors to really dive in and examine and identify where that you know what you know where 1:07:43 that that disease lives and then to really dissect it go in and and accelerate the research and finding the 1:07:50 cure of these neurodegenerative diseases i mean it's happening and think about 1:07:56 that acceleration like dr cow said i mean these uh you know these new findings you 1:08:01 know just five and ten years old i mean if cure psp wasn't here and we weren't getting uh the dona the brain donations 1:08:07 into the brain bank i mean we could be 20 30 40 50 years behind where we are now 1:08:13 it's your donations it's your generosity it's your engagement uh that are accelerating this so the more you can 1:08:19 give the faster we can accelerate this the more brains we can have than the deeper we can build that brain bank 1:08:25 and it's really up to you so friends let's uh let's do this and let's make this happen and i am taking another look 1:08:31 at the thermometer oh my gosh we are just about 70 percent there i know we've had the donations slow a little bit but 1:08:37 if everyone that's watching would you please send this out to your network 1:08:43 your facebook friends your instagram friends be like look i'm part of cure psp i love them and i love everything 1:08:48 that they're doing because they could save my life and they could save yours and uh invite them to make a donation uh 1:08:55 if you consider making a deeper donation this is that time and we still have those dollars from dr segeliano who came 1:09:02 up in the chat and she's like the generosity is amazing so friends let's do this let's get to that goal and let's 1:09:08 uh let's push ahead and let's uh let's accelerate that and uh it's uh it's that 750 donation that really really 1:09:15 reimburses that cost of a donations wouldn't you consider making that donation right now 750 just think about 1:09:22 that span over a year yeah that's not that much it's like 60 bucks a month i mean i spend more on 1:09:29 these things than um we're asking right now so if you'd like to make what we call a 1:09:34 latte legacy donation this is a great time uh to go ahead and do that make that 750 donation 1:09:41 and i want to uh thank everyone i just want to pop in and thank a couple donors that popped up here on my radar uh mike 1:09:48 uh dickie raphael jeff garvey linda spears diane larson thank you thank you 1:09:53 so much uh for joining us and being part of this thank you for um giving and having your donation matched uh so uh 1:10:00 friends let's hear directly uh from individuals who have been through this 1:10:05 process we're gonna hear from six people that have directly dealt with this very very difficult decision and learn about 1:10:11 the steps to enable a brain donation with their loved ones and they'll tell us about their experience and how this 1:10:17 process is and just kind of how it's been illustrated but it's you know hearing directly uh from uh you know 1:10:23 from these individuals to know the firsthand benefits of a brain donation so please welcome our friends 1:10:33 my name is uh jocelyn gervais finney and my late husband pierre gervais 1:10:39 um is is my loved one my name is paul freeman 1:10:46 my wife eva freeman had psp i'm i'm dawn sproul 1:10:52 my wife kathleen sproul passed away with psp about one month ago 1:10:59 and i am bethany sproul lebron i am her youngest daughter i am nancy stagliano and my 1:11:07 father vincent stagliano passed away from psp my name is solna brodie 1:11:13 and i'm the sister of dr lawrence brody and i've been 1:11:18 a supporter of qpsp for a number of years [Music] 1:11:27 when my wife was sick uh i was actually at a first time was at a family com conference 1:11:34 and dr dennis dixon was one of the speakers at the conference and mentioned the 1:11:39 brain donation program and also the brain autopsy and confirming 1:11:45 you know what they can do with confirming whether the person did have psp or had something 1:11:51 else or had a combination of complications i found out about the brain donation program while i 1:11:59 was helping my brother who had multiple different diagnoses 1:12:05 from many doctors mayo clinic came highly 1:12:10 recommended and dr dennis dixon um 1:12:15 was renowned a scientist and all the doctors said donate to that 1:12:21 brain bank and so that's why we donated to the brain bank at the mayo clinic as 1:12:27 a neuroscientist it for me is a critical thing for us to 1:12:34 work in every way possible to to understand the disease better so that we can treat it and we can cure it 1:12:40 and so certainly from the perspective of a daughter a neuroscientist uh this this area and 1:12:48 this organization is is really of high interest to me and then working in drug discovery and 1:12:53 biotechnology and working at a company called neuron 23 where we think about 1:12:59 and are trying to drug diseases like parkinson's thinking about diseases like psp 1:13:04 you realize the value of brain tissue and the scarcity of model 1:13:10 systems to to learn about diseases like psp and so so i think it's 1:13:16 a critical mission for the organization and for the field to 1:13:21 to get samples bringing them 1:13:32 my mother was not comfortable at all talking about um really the you know 1:13:38 the finality of what her reality was going to be in the next you know a couple of years ahead um but the thought 1:13:45 that she could do something you know um after she took her last breath that could help 1:13:52 her own family her own grandchildren her great-grandchildren down the road or other families and other grandmothers 1:13:59 that was really important to her care really wanted to be a part of the solution um you know he did recognize 1:14:06 that his um his illness was incurable that it was terminal 1:14:12 but so what what could we do what could he do um moving forward he wanted to be part 1:14:18 of the solution and you know even though the solution wasn't going to impact him uh he felt like moving forward hopefully 1:14:25 within [Music] the generation of his children there may be 1:14:31 some progress and he might contribute to that in some very small way 1:14:40 my brother had no hesitations considering donating his brain i was a bit hesitant 1:14:48 um i didn't know much about brain donation but i knew about tissue donation 1:14:54 and so um once i found out more about the brain donation program i was all in there are 1:15:02 people that are hesitant i i'd say just take it easy take it one step at a time 1:15:08 and and you'll get there but but the benefits far outweigh any hesitations 1:15:14 [Music] well we we had a discussion and when i 1:15:21 knew that she was passing i was in contact with the people at mayo 1:15:27 in jacksonville spoke with them they coordinated 1:15:33 with the hospital for the rain harvesting and 1:15:39 other than that filling out some forms we really didn't have it was not a very difficult process 1:15:46 ultimately it was the mayo clinic that had put us in touch with a private 1:15:53 pathologist who made arrangements with ultimate funeral 1:15:58 home to be able to go and take care of 1:16:03 harvesting [Music] 1:16:08 within six hours after her passing we get this email and we're like we did it you know we got it you know because 1:16:16 everything went flawlessly and you know it it takes a lot of moving parts it 1:16:22 involved us the funeral director the you know the pathologist hospice may general like all of these things and everything 1:16:28 aligned beautifully and it was honestly just it was almost perfect you know it 1:16:33 was a cause of celebration yeah in the family you know yeah we were instead of grieving we were celebrating we it gave 1:16:40 us it gave us light in a time that otherwise would have been a very hard day and it was like you know what 1:16:46 she's still doing something right now she's still you know giving to others 1:16:56 when after a few months we received the autopsy report 1:17:01 oh it was it was it was such a relief 1:17:07 to receive a diagnosis and to finally get closure it just meant so much to me 1:17:13 it was important it was important to pierre it was important to me and to our 1:17:19 children if you know since we had gone this far and made that commitment to really see 1:17:25 it through to the end [Music] so as a result i think it took about three months before we actually got the 1:17:32 final um the final diagnosis it just reinforces 1:17:38 that uh these the need the need for the um for the 1:17:44 autopsy to confirm because i i think that it 1:17:49 also provides the neurologists i guess there's 1:17:55 research regarding the diagnosis of the disease that can happen as a result of these 1:18:03 autopsy the help is that you at least have some closure 1:18:09 and you know what it was and to be able to know especially 1:18:15 you know for for my children whether they're something that 1:18:20 makes them genetically susceptible much more than psp which is 1:18:28 mostly not genetic it it can be familial 1:18:33 it is mostly non-familial but to find out or know whether you had 1:18:39 a disease even in the background that may have been familial that they need to be on the lookout for 1:18:47 is is huge and that's the only way you can find that 1:18:53 out is with the brain authors 1:19:00 i highly recommend the brain donation program the advice i'd offer is do it now it's a gift that 1:19:08 keeps on giving number one just do it we're not going to learn fast enough about this disease without 1:19:15 without access to good quality samples without understanding the patient journey 1:19:22 data about how the patients that have donated these samples 1:19:28 have lived what their disease looked like and and then getting those you know getting 1:19:34 that information the data the samples in the conversations with their clinicians their neurologists into the 1:19:41 right hands into investigators hands so that we can build an understanding of 1:19:46 the pathophysiology of psp we need all of that and we need all that to happen now we need we need to get 1:19:53 this work done as soon as possible so there are examples in neuroscience where we say time is brain 1:20:00 it's a very relevant saying here as well this is a very rapidly progressing disease 1:20:06 and we we don't have any time to waste and so i want to thank you for doing this and 1:20:11 allowing me to participate in it because i know that initiatives like this will help us find 1:20:16 a cure [Music] 1:20:34 well friends there you have it right from right from the mouths of family members who've been through this 1:20:40 process and and as touching as these stories are i mean you think about this the the 1:20:46 conversation is not an easy one to have with those loved ones that might be facing uh that end of life decision or 1:20:52 that final chapter that they have but this is a way that these family members these donors 1:20:58 are able to you know extend their legacy i mean this is a way to continue to be a part of the 1:21:04 solution and and friends won't you continue to be a part of the solution now we are just 1:21:09 about 70 to our goal and and i have a really really strong feeling in my heart that we're going to achieve that here 1:21:15 this evening there might be someone that's going to come in here just at the final second and push us over the top 1:21:20 but it's uh it's individuals like uh jocelyn and and dr nancy st leonano 1:21:26 whose match is still out there so if you want to have your donations double continue to give um or paul or solna or 1:21:31 bethany or don you know thinking back upon that loved one who lived you know that life will live but now was able to 1:21:38 again continue to keep that legacy continue to help uh be able to be a part 1:21:44 of that cure because you know friends you are a part of the solution you're collaborating with us here this evening 1:21:49 collaboration plus access equals treatments treatments which then can 1:21:54 turn into a cure so let's keep doing this there's lots of moving parts and you were a big part of this so let's 1:22:00 keep doing this and we can celebrate these lives and help them to then continue continue to live on and your 1:22:08 gift is a gift that keeps on giving because once that that ultimate gift of the brain donation is made it then goes 1:22:14 right into the researchers hands and and can help so many so many you know help our children help our grandchildren our 1:22:20 great great grandchildren this is generations that we are serving here right now so let's continue to do let's 1:22:27 do this this is confirmation this is collaboration the access is right now 1:22:32 and to donate we want you to do this and as you heard directly from dr nancy cigliano i mean she's not only just a 1:22:40 neuroscientist who really wants to help find this cure as fast as she can but it's also a daughter whose father you 1:22:47 know had had to suffer through this but she's like you know what i want my dad to live on i want him to do some great 1:22:53 work and and not only you know is is you know working through that donation but also putting her dollars behind this to 1:22:59 accelerate that and knows the value of these brain bank samples so let's do this friends now whether you've given 1:23:06 you know maybe a 50 donation to help with their educational package or can make that contribution of a hundred 1:23:12 dollars or like our friend judith you might have seen her name pop up in the donation uh level it said she gave 26 1:23:19 bucks that's not just a single gift that is a monthly gift so friends if you'd 1:23:24 like to make that 750 dollar a year gift right now and and put that on you 1:23:30 know give you know a portion monthly this is that chance to do it you can do that you can provide that grant provide 1:23:36 that sponsorship for that family to reimburse them for that brain donation and and and you can do that you can extend 1:23:42 that over an entire year's time so friends continue to give and and you know maybe you are working on your you 1:23:49 know kind of your legacy giving opportunity why not consider putting cure psp in that last will and testament 1:23:55 and and really again not only leaving that brain but also leaving those dollars you know behind to just keep 1:24:01 pushing it forward keep doing that and then also that 1500 donation uh help us 1:24:07 to support that genome sequencing and you saw that how it all works together i still can't even comprehend it my my 1:24:14 neurons are just banging against each other and like what did i just watch but we don't need to know the science but we 1:24:20 need to know that your donations has are really really making a difference here this evening so whether it's in 1:24:26 our direct fund the need fund the cure right now or friends heading over to our silent auction don't forget about that 1:24:32 that auction button hit that there's some great items that are in there continue to do this continue to be a 1:24:38 part of this continue to be a part of cure psp and and let's give so let's 1:24:43 keep going get that word out there remember to use the hashtags share this because it is also awareness that this 1:24:49 is a thing yes brain donations are a thing and we need them we need your help whether it's you know with dollars 1:24:56 or with you know donations let's let's do that right through here and friends you can share the website you can share 1:25:02 the facebook page you can share what we are doing together here tonight we have almost raised over 70 1:25:07 000 together and i have to thank everyone for continuing to give continue to be a 1:25:13 part of this it's the resources it's the research and it's the cures that you are part of this i mean kristoff i know you 1:25:20 know you're being diving into this and knowing how much good work that this is doing in the value that these donations 1:25:27 are i mean you've got to be so so excited so uh kristoff i mean this is great but we're so close to the to the 1:25:33 goal let's keep working hard because i know you're working hard every day yes we all are and and i know yeah i 1:25:39 know we're 30 from the goal um and and we are kind of getting close to to that 1:25:44 90 minutes that i told you we're gonna spend together uh it would be it would be really great if we were passing uh 1:25:50 the 70 000 but but uh i'm amazed at the generosity that we've gathered today already and and uh and you know thank 1:25:58 you again bobby for for bringing your energy into into this evening so again we're 30 short from our 1:26:04 goal but uh what i can tell you in this virtual world as i you know me and the team and everyone here i will be working 1:26:12 hard in the coming weeks uh to try to hit our hundred thousand dollar goal this is one of the silver lining of 1:26:18 virtual environment you know we've created a lot of videos and a lot of engagement and we'll keep them pushing 1:26:24 um many many weeks after tonight's event so i just want to thank you are we close to 1:26:31 a close to the end of our of our evening there and so i want to thank you all so much for joining uh there's so many 1:26:37 people who contributed to the success of this event uh the entire staff is here on the chat and on different uh portal 1:26:44 here to make sure everything is smooth so hopefully it was you know you could send us some some feedback i know there'll be a email sent to everyone uh 1:26:52 right right in a you know shortly after this even so you have more information uh i want to spend just a couple seconds 1:26:58 uh and and extend a heartfelt thank you uh to to the people that that contributed to this testimonial video uh 1:27:05 jocelyn jervis finney paul freeman who was a it was a great supporter at cure psp and and i consider 1:27:12 consider him a good friend also salner brody bethany sproul lebron and and don sproul 1:27:18 and others uh to me this testimonial really um summarized a lot of what we've 1:27:24 been talking about tonight from the importance of of coming up to a decision to to the 1:27:30 what i mentioned around solace and closure once uh the families get the report to the importance of of enabling 1:27:38 science and research so i thought this was all deeply moving um and and i want to thank everyone for 1:27:44 that so so that's all from me uh thank you for joining us again i'm christoph diaz vice president of uh scientific 1:27:51 affair at cure psp and it's been a pleasure and an honor uh to to be with you with you all tonight uh and so 1:27:58 the closing remark will go to bobby so back at your body thank you all well dr diaz what an honor to share this 1:28:05 virtual event with you and in honor to be a part of this mission and to be an honor to be a part of cure psp and i i 1:28:12 have to say a very very special thank you to carissa dunn who stepped up and said you know i'm going to give monthly 1:28:18 62.50 a month think about that i mean we 1:28:23 dropped that you know at a fast food restaurant and she said i'm gonna make the decision and i'm gonna give monthly 1:28:29 and i'm gonna donate uh because there are families out there that this this this little bit of dollars could be 1:28:36 holding them back from making this very vital donation and uh your donations i have to thank 1:28:41 you now friends yes we're just a little bit shy of the goal but you know what's exciting we have almost fully funded 1:28:47 100 grants going back to family so so let's celebrate that i mean this this is 1:28:53 amazing of all of us coming together because here at the beginning of the night it was zero and here we're at the 1:28:59 end of our event and it's 70 000 or more and the giving will continue to keep 1:29:04 going so continue to be a part of this and uh even the smallest donation you can be a part of this effort to offer 1:29:10 support resources uh to the lives of so many in the neurodegeneration uh community we also welcome larger 1:29:17 gifts and if there isn't a level that i have asked at or you want to give it an anonymous gift please please please uh 1:29:23 reach out email text however it is uh but this is your chance to be a part of this oh oh don't forget don't forget our 1:29:30 auction we've got our auction is uh up there and uh friends uh that's gonna be open until 7pm eastern time 1:29:38 that's right the silent auction will be open until 7pm eastern time uh is when that's going to close don't forget 1:29:44 silent auction silent auction the computer might have glitched is going to be open until 7 pm on sunday 1:29:51 7 00 p.m eastern time so lots of time share that out there let's get some going in there and friends 1:29:57 keep keep giving and being a part of this so i want to thank all of you for collaborating with us helping us to 1:30:03 provide that access and helping us create these treatments this research these resources and all of this thank 1:30:09 you thank you thank you again my name is bobby truly inspired to be here with you 1:30:14 this evening to help us cure psp all right have a great evening we'll see you all soon all right thanks again 1:30:21 congratulations everyone keep giving let's do this let's do it all right we'll see y'all later bye everyone 1:31:10 do [Music] 1:31:24 you 59:15 NOW PLAYING Rese Synapse21: The CurePSP Brain Bank Benefit Event 190 viewsSep 2, 2021