Shedding Light and Love on a Rare Genetic Condition with Deborah Vauclare

Brain & Life

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.

We invite you to participate in our listener survey! By participating in the brief survey, you will have the opportunity to enter your name and email address for a chance to win one of five $100 Amazon gift cards.

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

We want to hear from you!

Have a question or want to hear a topic featured on the Brain & Life Podcast?

· Record a voicemail at 612-928-6206

Email us at [e-mail]

Social Media:

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

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