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

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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

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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

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

· Record a voicemail at 612-928-6206

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Social Media:

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

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

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.

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

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

In this episode of the Brain & Life podcast, award-winning actor, singer, and advocate Aaron Lazar joins co-host Dr. Daniel Correa to discuss his journey with amyotrophic lateral sclerosis (ALS) and how it has affected his daily outlook on life. Aaron shares about his symptoms, diagnostic journey, and how he is continuing to find hope. Dr. Correa is then joined by Dr. Richard Bedlack, Stewart, Hughes, and Wendt Distinguished Professor of ALS at Duke and director of the Duke ALS Clinic. Dr. Bedlack explains just how he is helping his patients find hope in their ALS journeys while also making realistic plans for the future.

Additional Resources

Aaron Lazar’s “The Impossible Dream”

What is Amyotrophic Lateral Sclerosis (ALS)?

A Marathoner on a Quest to End ALS

Steve Gleason, ALS Advocate and NFL Veteran, Receives Courage Award

Other Brain & Life Episodes on this Topic

Making the Years Count with Brooke Eby, Influencer Living with ALS

Finding Strength in ALS Advocacy with Podcaster Lorri Carey

Hop on a Cure for ALS with John Driskell Hopkins

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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: Aaron Lazar @aaronscottlazar; Dr. Richard Bedlack @stitchingstrength

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

In this episode of the Brain & Life podcast, veteran Lindsay Gutierrez joins co-host Dr. Daniel Correa. Lindsay shares about how she went from sustaining a traumatic brain injury (TBI) on duty to climbing Mount Kilimanjaro! She explains how her injury happened, what her recovery process was like, mental health symptoms she experienced, and how she came to climb the fourth-highest peak in the world. Dr. Correa is then joined by Dr. Michael Jaffee, a board-certified neurologist, director of the University of Florida Brain Injury, Rehabilitation and Neuroresilience Center, and chair of the UF Department of Neurology. Dr. Jaffee breaks down the distinct types of TBIs, how patients are affected, and what preventative measures are being worked on.

Additional Resources

A Veteran Climbs Mount Kilimanjaro after a Traumatic Brain Injury

What Is Traumatic Brain Injury?

How Sports Neurologists Protect Football Players’ Brains

After Traumatic Brain Injury, a Veteran Finds Purpose in Advocacy

Other Brain & Life Episodes on this Topic

Advocacy and Athleticism with the Pittsburgh Steeler’s Cam Heyward

U.S. Soccer Legend Briana Scurry on Concussion and Mental Health

Healing the Traumatized Brain with Dr. Sandeep Vaishnavi

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Social Media:

Guests: Lindsay Gutierrez @linds_gutierrez; Dr. Michael Jaffee @UFmedicine

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

In this episode of the Brain & Life podcast, co-host Dr. Katy Peters is joined by Will Shortz, the crossword editor for the New York Times and puzzle master of Weekend Edition Sunday on National Public Radio. Will shares how he is recovering from two strokes that he suffered in February 2024 and which types of rehabilitation really worked for his mind and body. He also discusses how he found his love for puzzles and puts Dr. Peters on the spot with one to solve on her own! Dr. Peters is then joined by Dr. Argye Hillis, Executive Vice Chair of the Department of Neurology and the Director of the Cerebrovascular Division of Neurology at Johns Hopkins Hospital. Dr. Hillis explains how strokes are diagnosed and treated, and what exciting research is happening right now.

Additional Resources

Crossword Editor Will Shortz Shares How He's Recovering from Stroke

How Board Games Helped This Man Recover from a Stroke

Get Smart about Stroke

Navigating the Complexities of Stroke

Other Brain & Life Episodes on this Topic

Matt and Kanlaya Cauli on Rebuilding Life After Stroke

Timothy Omundson on Stroke Recovery and His Return to Television

Peloton Instructor Bradley Rose on Returning to Life After Stroke

We want to hear from you!

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

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Social Media:

Guests: Will Shortz @shortzwill; Dr. Argye Hillis @hopkinsneurons

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

In this episode of the Brain & Life podcast, co-host Dr. Katy Peters is joined by Jessica Patay, mother, caregiver, and founder of the nonprofit We Are Brave Together. Jessica discusser her son’s diagnosis with a rare genetic neurologic condition called Prader-Willi Syndrome and how it led her to found an organization whose mission is to preserve and protect the mental health of caregiving moms of disabled and neurodiverse children. Dr. Peters is then joined by Dr. Emily De Los Reyes, attending pediatric neurologist at Nationwide Children’s and Professor of Clinical Pediatrics and Neurology at The Ohio State University College of Medicine. They discuss exactly what Prader-Willi syndrome is, how it’s diagnosed and treated, and what the future looks like for patients and their families.

Additional Resources

We Are Brave Together

How Parents Advocate for Their Children with Rare Diseases

These Parents are Giving Their Teenager a Life of Adventure Despite Rett Syndrome

Sibling Caregivers Share Rewards and Challenges

Other Brain & Life Episodes on this Topic

Resiliency and Caregiving with Janet Fanaki

Journalist Richard Engel on Parenting a Child with Rett Syndrome

Gavin McHugh is Building an Acting Career and a Community with Cerebral Palsy

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: Jessica Patay @wearebravetogether; Dr. De Los Reyes @nationwidekids

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