38. GA RDAC Update + Meet an Expert: Dr. Terry Jo Bichell, Founder & Director at COMBINEDBrain

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The Rare Disorder Podcast

Shivani Vyas

43 episodes

1 day ago

The Rare Disorder Podcast is a podcast created by Shivani Vyas, a high school senior, young changemaker, and rare disease advocate, dedicated to spreading awareness for rare diseases. This podcast is divided into 2 main series. In the "Meet a Fighter," Shivani interviews patients and those affected by rare diseases allowing them to share their inspirational stories. In "Meet An Expert/Partner," Shivani interviews public health experts, rare disease organization leaders, rare advocacy leaders, and more! Check out my other initiatives and platforms: https://linktr.ee/theraredisorderpodcast

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38. GA RDAC Update + Meet an Expert: Dr. Terry Jo Bichell, Founder & Director at COMBINEDBrain

The Rare Disorder Podcast

49 minutes 23 seconds

3 years ago

38. GA RDAC Update + Meet an Expert: Dr. Terry Jo Bichell, Founder & Director at COMBINEDBrain

Show Notes:

In this episode, I chat with Dr. Terry Jo Bichell, Founder & Director at COMBINEDBrain.

Terry Jo Bichell worked as a documentary filmmaker in the early days of videotape, then became a public health nurse-midwife after filming a difficult birth in West Africa. When her youngest child, Lou, was diagnosed with Angelman syndrome, she switched from midwifery to clinical research on Angelman syndrome. Eventually, she went back to school to earn a PhD in neuroscience from Vanderbilt University in an effort to find treatments for her son. Along the way, she studied gene-environment interactions in Huntington disease as well as circadian aspects of Angelman syndrome and was a columnist for HDBuzz. After graduating, she was the Founding Director of the Angelman Biomarkers and Outcome Measures Alliance until 2018.

Dr. Bichell founded a new non-profit in 2019, COMBINEDBrain (Consortium for Outcome Measures and Biomarkers for Neurodevelopmental Disorders), to assist other rare and ultra-rare neurogenetic disorders with clinical trial preparations.

Explore more!

Website: https://combinedbrain.org/

Instagram: https://www.instagram.com/combinedbrain/

Episode Segments:

Intro, Rare disease fact of the week, Guest interview, Q & A Session, Outro

See you all next week!

- Shivani Vyas ☺

@raredisorderpod on IG & Twitter, The Rare Disorder Podcast on LinkedIn
https://linktr.ee/theraredisorderpodcast