Welcome to the Empowered Patient Podcast with Karen Jagoda. This show is a window into the latest innovations in applying generative AI, novel therapeutics and vaccines, and the changing dynamics in the medical and healthcare environment. One focus is on how providers, pharmaceutical companies, and payers are empowering patients. In addition, conversations are often about how providers, care facilities, pharmaceutical companies, and payers are being empowered by technology to improve patient outcomes and reduce friction across the healthcare landscape.
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- Virtual and digital health
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Dec 3, 2024
This is a conversation with Dr. David Amaral, a distinguished professor at the MIND Institute and scientific director of Autism BrainNet, and Dorothy Frisch, an activist and supporter of the program. Autism BrainNet is funded by the Simons Foundation to collect and study postmortem brain samples from individuals with autism to understand the neurological basis of the disorder better. Currently, there are no biomarkers for autism, so studying the brains and accomplishments of those who had autism can lead to a better understanding of the abilities and challenges seen on the autism spectrum.
David explains, "We went to the Simons Foundation and, with their support, have established a network in the United States. We have three collection sites: one at the UC Davis Mind Institute in Sacramento, one at UT Southwestern in Dallas, Texas, and one at the Mass General Hospital in Boston, where a postmortem brain donation can be sent. Those brains are then prepared in ways that will facilitate all kinds of research both now and in the future. We have developed this resource to foster autism research throughout the world. What we are seeing now that we've just celebrated our 10th anniversary is that we've collected nearly 400 brain donations so far, and we're seeing an increasing demand from researchers worldwide to get access to that resource."
Dorothy elaborates, "I was the main support person for my older cousin, Gregory Blackstock, for a couple of decades. He needed a lot of executive function help. He lived on his own but couldn't make critical decisions very well. As long as everything went along without any hitch, he was generally fine. But as he got older and experienced more physical infirmities, then I needed to step up more. So then he was very obviously autistic, so it was kind of peripherally interesting to me."
"One of his savant traits was that he was an incredible artist. He also spoke many languages that he picked up by ear. He had a perfect pitch and learned the accordion, but he could easily transfer that information to playing the organ and the piano. He had almost total recall of anything that crossed his path that interested him. And so, just being around him and being involved with furthering his artistic career gave me further insights about the people I met who were interested in autism."
#AutismBrainNet #BrainDonation #AutismResearch #Autism #BrainResearch
