Neurofibromatosis Advocacy and Community Building with the Gilbert Family Foundation

In this week's episode, a guest host joins Brain & Life podcast! Dr. Bhooma Aravamuthan, Assistant Professor of Neurology, pediatric movement disorders specialist, and neuroscientist studying dystonia in cerebral palsy (CP), speaks with child actor Gavin McHugh about how CP affects his acting career, the connections he has built with his fans on social media, and what terms like "disabled" and "special needs" mean to him. His mother, Lisa McHugh, also shares about Gavin's many talents and what she wishes people knew about CP. Then, Dr. Aravamuthan speaks with Brain & Life co-host Dr. Daniel Correa about what cerebral palsy is, what patients can expect in their lifetime, and the power of finding a community.   Additional Resources What is Cerebral Palsy? How Parents Advocate for Their Children with Rare Diseases Biking Gives Freedom to a Teen with Cerebral Palsy Becky Dilworth Skied and Raised a Family Despite Cerebral Palsy The ABCs of Advocacy   Other Brain & Life Podcast Episodes on These Topics RJ Mitte on Living Confidently with Cerebral Palsy Josh Blue Uses Humor to Ease the Stigma Around 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 [email protected]   Social Media:   Guests: Gavin McHugh @iamgavinmchugh; Dr. Bhooma Aravamuthan @drbhooma Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Katy Peters @KatyPetersMDPhD

In this week’s episode, runner Cheryl Hile joins Brain & Life Podcast co-host Dr. Daniel Correa to discuss her experience running over 60 marathons across all seven continents after her diagnosis with Multiple Sclerosis (MS). She shares why running speaks to her, how an orthotic helps her stay on track, and what’s next in her journey. Then Dr. Correa is joined by Dr. Lauren Gluck, Director of the Montefiore Multiple Sclerosis Center and Assistant Professor at Albert Einstein College of Medicine. She explains what MS is, outlines treatment options, and delves in to how vital and adaptable exercise can be for patients.   Additional Resources Run A Myelin My Shoes What is Multiple Sclerosis (MS)? How Couples Navigate Multiple Sclerosis Hiking the Appalachian Trail for Multiple Sclerosis Online Exercise Classes Can Help People with Neurologic Disorders Improve Symptoms   Other Brain & Life Podcast Episodes on These Topics Voices from the Multiple Sclerosis Community Nancy Davis’ Race to Erase Multiple Sclerosis Author Samantha Irby's Journey as a Young Caregiver Chef Mariana Orozco on Multiple Sclerosis and the Healing Power of Food   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: Dr. Lauren Gluck @montefiorehealthsystem Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Katy Peters @KatyPetersMDPhD

In this week’s episode, actor Oscar Nuñez joins Brain & Life Podcast co-host Dr. Daniel Correa to discuss his family’s experiences with dementia and Alzheimer’s. He shares how he helps keep his loved ones safe then his wife, actress Ursula Whittaker, shares the resources and supports she has found throughout this journey. Dr. Correa is then joined by Dr. Joel Salinas, a neurologist, clinical assistant professor at NYU Grossman School of Medicine, and chief medical officer of Isaac Health in New York. Dr. Salinas shares information about all stages of memory loss and demonstrates ways to have conversations with your loved ones at all stages of their life to make plans that keep everyone safe and happy.   Additional Resources How to Keep Loved Ones with Dementia Safe from Firearms How to Talk to Loved Ones Who Have Dementia Actor Hector Elizondo Encourages Caregivers to Ask For Help Learn more about Dr. Joel Salinas What Is Alzheimer's Disease? Other Brain & Life Podcast Episodes on These Topics Finding Hope and Creating Change: Discussing Alzheimer’s Advocacy with Cynthia Stone and Walt Dawson Lauren Miller Rogen on Facing a Parent’s Early-Onset Alzheimer’s Diagnosis Journalist Greg O’Brien on Chronicling His Life with Alzheimer’s   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: Oscar Nuñez @oscarnunezla; Ursula Whittaker @ursulacwhittaker; Dr. Joel Salinas @JoelSalinasMD Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Katy Peters @KatyPetersMDPhD

In this week’s episode, Brain & Life Podcast co-host Dr. Daniel Correa speaks with Khari “Needlz” Cain, music producer and father to Makayla, a 16-year-old on the autism spectrum. Khari and his family recently created a film titled Makayla’s Voice: A Letter to the World that shares her experience finding a way to communicate using letter board therapy. As Makayla’s voice has gradually emerged, she has shown her intelligence, interests, and sense of humor to her loved ones. Khari discusses that journey, the accessibility of treatment, and his hopes for the future. Then Dr. Deepa Menon, a child neurologist and specialist in neurodevelopmental medicine, explains autism, genetic testing, Phelan-McDermid syndrome, and different types of therapies that may help families like Makayla’s. Additional Resources Makayla’s Voice: A Letter to the World What is Autism Spectrum Disorder? Lego Therapy Builds Confidence in Patients with MS and Autism A Theater Group That Features Neurodiversity on the Stage   Other Brain & Life Podcast Episodes on These Topics From Adolescence to Adulthood: Exploring Autism with Abbey and Christine Romeo   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: Khari Cain @prodbyneedlz; Dr. Deepa Menon @ kennedykriegerinstitute Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Katy Peters @KatyPetersMDPhD

In this week’s episode, Brain & Life Podcast co-hosts Dr. Daniel Correa and Dr. Katy Peters introduce their pets and answer a listener question about ALS. Then, Dr. Peters discusses neurologic disorders in pets with Dr. Ann Tilton. With more than 30 years of experience as a pediatric neurologist, Dr. Ann Tilton is a Professor of Neurology and Pediatrics at LSU Health New Orleans. She has also loaned her expertise to other species! She tells stories from her time diagnosing pangolins and monkeys at the zoo and shares her insights and experiences with neurologic disorders in pets.   Additional Resources Can Pets Have Neurologic Disorders? Pets May Be Good for Brain Health Phineas the Cat Spreads Awareness of a Rare Neurologic Disorder I am ALS   Other Brain & Life Podcast Episodes on These Topics Finding Strength in ALS Advocacy with Podcaster Lorri Carey Hop on a Cure for ALS with John Driskell Hopkins The Campaign to Cure ALS with Brian Wallach and Sandra Abrevaya   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:   Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Katy Peters @KatyPetersMDPhD

In this week’s episode, Cole & Charisma Sydnor of “Roll with Cole & Charisma" join Brain & Life Podcast co-host Dr. Katy Peters to discuss their interabled relationship, building an online community, and Cole’s C5-C6 spinal cord injury. They share what keeps them motivated, tips for an accessible household, and what their online audience has taught them. Then, Dr. Alberto Martinez-Arizala joins Dr. Peters to discuss spinal cord injury treatment journeys and what exciting advancements may be coming soon.   Additional Resources Roll with Cole & Charisma What is Spinal Cord Injury? Interabled Couples Share How They Make Their Relationships Work A Spinal Cord Injury Survivor Opens an Affordable Rehab Center Singer Gloria Estefan Supports Research to Cure Paralysis Promising Advances in Robotics-assisted Rehabilitation Therapies   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: Cole Sydnor @roll.with.cole; Charisma Sydnor @happilycharisma Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Katy Peters @KatyPetersMDPhD

In this episode, hosts Dr. Daniel Correa and Dr. Katy Peters answer your questions. They discuss the relationship between dementia and heart disease, stroke recovery, and the transition to being a caregiver for a loved one with multiple sclerosis. They also touch on the effects of cerebellum damage and why it feels so good to find people to relate to you in your health journey. Thank you for submitting your questions and sharing your comments about the Brain & Life Podcast.   Dementia & Heart Disease A Dementia Handbook for Patients and Families Eating Ultra-Processed Foods May Increase Risk of Dementia Cardiovascular disease, associated risk factors, and risk of dementia: An umbrella review of meta-analyses   Stroke Recovery Ed Begley Jr. on Utilizing a Healthy Lifestyle to Thrive with Parkinson’s Disease Timothy Omundson on Stroke Recovery and His Return to Television Critical Period After Stroke Study (CPASS): A phase II clinical trial testing an optimal time for motor recovery after stroke in humans   Multiple Sclerosis and Caregiving Voices from the Multiple Sclerosis Community Author Samantha Irby's Journey as a Young Caregiver What is Multiple Sclerosis (MS)?   Finding Community Creating a Community to Keep Our Brains Healthy How Mental Health and Brain Health Are Connected Pilot Study to Describe the Trajectory of Symptoms and Adaptive Strategies of Adults Living with Low-grade Glioma Social Network Structure Is Related to Functional Improvement From Home-Based Telerehabilitation After Stroke   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:  Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Katy Peters @KatyPetersMDPhD

In this week’s episode, Brain & Life Podcast co-host Dr. Katy Peters discusses the Gilbert Family Foundation’s work on neurofibromatosis (NF) with their executive director, Laura Grannemann. She shares about ways they connect with the NF community, ongoing research the foundation is leading, and how anyone can get involved in advocacy work. Dr. Peters then speaks with neurologist and Director of The Johns Hopkins Comprehensive Neurofibromatosis Center, Dr. Jaishri Blakeley, about what exactly neurofibromatosis is, how it affects patients, and treatment options for all ages.   Additional Resources The Gilbert Family Foundation What is Neurofibromatosis? New Research Offers More Options to People with Neurofibromatosis Type 1   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: Laura Grannemann @gilbertfamilyfoundation; Dr. Jaishri Blakeley @hopkinsmedicine Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Katy Peters @KatyPetersMDPhD

In this week’s episode, Brain & Life Podcast hosts Dr. Daniel Correa and Dr. Katy Peters discuss some of their favorite articles in the most recent edition of Brain & Life Magazine. They discuss the “Blue Zone” lifestyle, links between skin problems and neurologic conditions, coffee’s potential brain health benefits, and how juggling can increase neuroplasticity. If you would like to read these articles and more, be sure to subscribe to Brain & Life Magazine for free!   Brain & Life Articles Mentioned “Blue Zones” Author Dan Buettner Shares the Secrets to a Long and Healthy Life Skin Problems May Be Early Signs of a Neurologic Condition Drinking Coffee May Reduce the Risk of Neurologic Disease How Juggling Can Increase Neuroplasticity   Additional Resources Exploring Longevity with Author Dan Buettner The Keys to Longevity The Healing Arts   We want to hear from you! Have a question or want to hear a topic featured on the Brain & Life Podcast? 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:   Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Katy Peters @KatyPetersMDPhD

In this week’s episode, Brain & Life Podcast host Dr. Katy Peters and playwright Sarah Ruhl discuss her Bell’s Palsy diagnosis (Idiopathic seventh nerve palsy) and the book she wrote about her experience, Smile: The Story of a Face. Sarah discusses the onset of her symptoms after giving birth to twins, how this diagnosis has affected her work life, and the importance of asking for help. Then, neurologist Dr. Gary Gronseth joins Dr. Peters to discuss just what Bell’s Palsy is, what the risk factors are, and reminds listeners that with a diagnosis also comes with lots of hope for the future.   Additional Resources Smile: The Story of a Face by Sarah Ruhl Playwright Sarah Ruhl on Losing the Ability to Smile Due to Bell's Palsy What Doctors Know About Bell's Palsy Bouncing Back from Bell’s 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 [email protected]   Social Media:   Guests: Sarah Ruhl @sarah_ruhl_ Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Katy Peters @KatyPetersMDPhD