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 BLpodcast@brainandlife.org

Social Media:

Guests: Roon App @roon.care

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

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 BLpodcast@brainandlife.org

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, 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

We Exist by Tanita Allen

What is Huntington’s Disease?

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 BLpodcast@brainandlife.org

Social Media:

Guests: Tanita Allen @tanitaallen234; Dr. Katie Moore @dukeneurores

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