Rare Thoughts on a Rarer Neurologic Condition
Description
In this episode of the Brain & Life podcast, co-host Dr. Katy Peters is joined by Christina Coates, president and founding member of an organization called Hypertrophic Olivary Degeneration Association (HODA). Christina shares about her own journey with hypertrophic olivary degeneration and how she was inspired to found HODA and build an advocacy community. Dr. Peters is then joined by Dr. Vikram Shakkottai, professor of neurology at UT Southwestern Medical Center in Dallas, Texas and Dedman Family Distinguished Chair in Neurologic Disease. Dr. Shakkottai discusses cerebellar ataxia, hypertrophic olivary degeneration, how these disorders are treated, and what upcoming research there is to look forward to.
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Additional Resources
HODA - Working to make HOD History
Forming a Foundation Bolsters Hope After a Rare Diagnosis
Advice for Caregivers of People with Rare Diseases
What is ataxia and cerebellar or spinocerebellar degeneration?
Other Brain & Life Episodes on this Topic
Neurofibromatosis Advocacy and Community Building with the Gilbert Family Foundation
Making a Lasting Impact with The Brain Donor Project’s Tish Hevel
We Are Brave Together with Jessica Patay
Strength in Unity: Advocating and Advancing Research for Brain Tumors
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Have a question or want to hear a topic featured on the Brain & Life Podcast?
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Social Media:
Guests: Christina Coates @hodassoc; Dr. Vikram Shakkottai @utswmedcenter
Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Katy Peters @KatyPetersMDPhD