Shedding Light and Love on a Rare Genetic Condition with Deborah Vauclare
11/14/24 • 54 min
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
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 [email protected]
Social Media:
Guests: Deborah Vauclare @bisousforleo; Dr. Darius Adams @AtlanticHealth
Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Katy Peters @KatyPetersMDPhD
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
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 [email protected]
Social Media:
Guests: Deborah Vauclare @bisousforleo; Dr. Darius Adams @AtlanticHealth
Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Katy Peters @KatyPetersMDPhD
Previous Episode
Author Tanita Allen on Existing with Huntington’s Disease
In this episode of the Brain & Life podcast, author Tanita Allen joins Dr. Katy Peters to discuss her experience with Huntington’s Disease and how it inspired her to write her book We Exist. Tanita shares about the rocky diagnosis process, how she manages day-to-day symptoms, and why she was called to share her story in a book. Dr. Peters is then joined by Dr. Katie Moore, Assistant Professor of Neurology and Associate Director of the Neurology Residency Program at Duke University Medical Center. Dr. Moore explains what Huntington’s Disease is, dispels some diagnostic myths, and what patients and caregivers can look forward to in the future.
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
Promising Therapies May Help Huntington’s Disease
Huntington’s Disease Society of America
Other Brain & Life Episodes on this Topic
Rare Thoughts on a Rarer Neurologic Condition
We Are Brave Together with Jessica Patay
Author, Speaker Jackie Stebbins on Rebuilding Her Life After Autoimmune Encephalitis
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 [email protected]
Social Media:
Guests: Tanita Allen @tanitaallen234; Dr. Katie Moore @dukeneurores
Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Katy Peters @KatyPetersMDPhD
Next Episode
Apps and Self-Advocacy with Roon’s Dr. Rohan Ramakrishna
In this episode of the Brain & Life podcast, Dr. Daniel Correa and Dr. Katy Peters answer some of your questions. Then, Dr. Peters is joined by Dr. Rohan Ramakrishna, professor of Neurosurgery at Weill Cornell Medical College and co-founder of an application called Roon. Roon taps into accurate health information, particularly in the areas of ALS, dementia, and brain tumors, and connects patients and caregivers with the doctors and communities they’re looking for. Dr. Ramakrishna explains how this app came to be, who it’s helping, and what’s coming next.
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
Roon- Answers from Medical Professionals
How to Be Your Own Best Advocate
How Patient Organizations Engage Communities During the Pandemic
Caregivers Share How They Keep Loved Ones Engaged at Home
Other Brain & Life Episodes on this Topic
Building Healthy Digital Habits with Dr. Faye Begeti
Influencer Chan Plante on Coping with Misdiagnosis and Finding a Community
We Are Brave Together with Jessica Patay
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 [email protected]
Social Media:
Guests: Roon App @roon.care
Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Katy Peters @KatyPetersMDPhD
If you like this episode you’ll love
Episode Comments
Generate a badge
Get a badge for your website that links back to this episode
<a href="https://goodpods.com/podcasts/brain-and-life-486818/shedding-light-and-love-on-a-rare-genetic-condition-with-deborah-vaucl-78324032"> <img src="https://storage.googleapis.com/goodpods-images-bucket/badges/generic-badge-1.svg" alt="listen to shedding light and love on a rare genetic condition with deborah vauclare on goodpods" style="width: 225px" /> </a>
Copy