In this episode of the Brain & Life podcast, co-host Dr. Daniel Correa is joined by Deborah Vauclare, loving mother of Leo, who is living with a rare genetic neurodegenerative condition called Infantile Neuroaxonal Dystrophy (INAD.) Deborah shares about Leo’s diagnosis and symptoms and how she and her family started an organization called Bisous for Léo with the goal to eradicate INAD and other related neurodegenerative diseases. Dr. Correa is then joined by Dr. Darius Adams, clinical geneticist who works as the Medical Director of the Goryeb Children’s Hospital Genetics and Metabolism Division. Dr. Adams explains what INAD is and what types of research are being conducted to better the lives of patients and their families.

 

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Additional Resources

Bisous for Léo

INADCure Foundation

How Parents Advocate for Their Children with Rare Diseases

Advice for Caregivers of People with Rare Diseases

 

Other Brain & Life Episodes on this Topic

Rare Thoughts on a Rarer Neurologic Condition

Advocacy and Athleticism with the Pittsburgh Steeler’s Cam Heyward

Neurofibromatosis Advocacy and Community Building with the Gilbert Family Foundation

 

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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: Deborah Vauclare @bisousforleo; Dr. Darius Adams @AtlanticHealth

Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Katy Peters @KatyPetersMDPhD