Shows
The Neurological Disorder Podcast24. Here's an Ally: ParkingNSites ft. Jawanza LamarSend us a textThis week's episode is with Jawanza Lamar, the founder of ParkingNSites, an organization dedicated to breaking down parking barriers and improving accessibility for mobility-challenged individuals.After experiencing a life-changing accident, Jawanza saw firsthand the struggles people with mobility challenges face—especially when it comes to accessible parking and ADA compliance. This inspired him to take action and launch ParkingNSites to improve accessibility and ensure cities better accommodate mobility-challenged individuals.In this episode, we dive into the unseen challenges related to accessible parking, particularly in major cities like At...2025-03-2231 minThe Neurological Disorder Podcast23. Here's an Ally: Dravet Syndrome Foundation ft. Mary Anne MeskisSend us a textThis week's episode is with Mary Anne Meskis, a founding member and the Executive Director of the Dravet Syndrome Foundation (DSF)—a nonprofit dedicated to raising awareness, providing support, and funding research for Dravet syndrome.Dravet syndrome is a rare and severe form of epilepsy that begins in early childhood, typically caused by a mutation in the SCN1A gene. It leads to frequent and prolonged seizures, developmental delays, and other lifelong challenges, including changes in appetite, mobility, sleep, and growth. While anti-seizure medications are used to manage symptoms, seizure control re...2025-02-2821 minThe Neurological Disorder Podcast22. Here's an Ally: National Brain Tumor Society ft. Tom HalkinSend us a textThis week's episode is with Tom Halkin, the Director of Public Affairs at the National Brain Tumor Society—the largest patient advocacy organization in the United States dedicated to curing brain tumors and supporting patients and their families.In our conversation, Tom sheds light on the harsh reality that, while survival rates for many other cancers have improved in recent years, brain cancer survival rates have remained largely stagnant. We explore the groundbreaking efforts of the National Brain Tumor Society, including their success in nearly doubling federal funding for brain tumor re...2025-01-161h 01The Neurological Disorder Podcast21. Here's a Warrior: Multiple Sclerosis & Type 1 Narcolepsy ft. Nicole KenyonSend us a textThis week's episode is with Nicole Kenyon, head of the National MS Society Community Council in Tampa and a passionate fitness enthusiast. Living with Multiple Sclerosis and Type 1 Narcolepsy, she is committed to empowering others through legislative advocacy, fundraising, and fitness and community initiatives.In our conversation, Nicole opens up about navigating the complexities of the healthcare system to ensure she receives proper care, and she shares the challenges she has faced in receiving her MS and Narcolepsy diagnoses. We also touch on the importance of self-advocacy in the medical setting...2024-12-0847 minThe Neurological Disorder Podcast20. Here's a Warrior: Traumatic Brain Injury ft. Erica Renee WalkerSend us a textThis week's episode is with Erica Renee Walker, a TBI survivor and coach who is dedicated to raising awareness and helping others navigate life with brain injuries.In this episode, Erica opens up about her experience with traumatic brain injury (TBI), discussing how she sustained her injury, the hidden symptoms she manages, and how she stays positive and hopeful throughout her journey. We also talk about the advocacy work she does through her Instagram and YouTube channels, where she shares shares vlogs, documentaries, and messages of encouragement for other TBI survivors...2024-10-2122 minThe Neurological Disorder Podcast19. Here's a Warrior: Tuberous Sclerosis Complex ft. Nic, Elizabeth, & Beckett BrownSend us a textThis week's episode is with Nic Brown, father of Beckett. After their 2-year-old son Beckett was diagnosed with Tuberous Sclerosis Complex, a rare genetic disorder, Nic and his wife Elizabeth became dedicated advocates for the cause.In this episode, Nic shares their long journey to obtain a diagnosis for Beckett and their challenges in navigating the healthcare system for his condition. He then discusses the various symptoms associated with TSC and the complexities of managing them. We also explore how Nic and his wife, Elizabeth, ensure Beckett enjoys a fulfilling childhood...2024-08-1125 minThe Neurological Disorder Podcast18. Here's an Ally: Foundation to Fight H-ABC ft. Michele Levoir SloanSend us a textThis week's episode is with Michele Levoir Sloan, co-founder of the Foundation To Fight H-ABC. Michele and her husband started the foundation in 2015 after their daughter was diagnosed with H-ABC. Since then, they have supported families affected by this condition worldwide, collaborated with numerous nonprofits, and worked alongside biotechnology companies to support research for a cure.In this episode, Michele and I discuss her inspiration for creating the Foundation to Fight H-ABC, its mission, and its initiatives/fundraisers. We then dive into current research focused on finding a cure for H-ABC...2024-07-3020 minThe Neurological Disorder Podcast17. Here's an Ally: Patient Helpline + Patients Rising ft. Samantha SauerSend us a textThis week's episode is with Samantha Sauer, a patient navigator and the Director of the Patient Helpline at Patients Rising. Patients Rising is an organization that aims to empower patients in America to advocate for reforms, placing them, alongside their doctors, in control of their healthcare choices. The Patient Helpline, a nonprofit program associated with Patients Rising, provides direct and personalized access to needed resources. Samantha and her team help patients navigate challenges in their healthcare journey, including transportation, insurance, and medicinal access issues. Today, Samantha shares the initial purpose of t...2024-07-1636 minThe Neurological Disorder Podcast16. Here's a Warrior: Autism Spectrum Disorder & Type 1 Narcolepsy ft. Rachel NesmithSend us a textThis week's episode is with Rachel Nesmith, a singer-songwriter, mother, and advocate. Rachel has Autism Spectrum Disorder and Type 1 Narcolepsy, so today, we begin by discussing the setbacks she has faced and overcome living with ASD and then transition to her Narcolepsy.Rachel and I start by talking about the misconceptions behind ASD, how she experiences and manages sensory overload, and how she advocates on her behalf in social settings. We also discuss her diagnosis journey with Type 1 Narcolepsy, how she adjusted her life and education after receiving her diagnosis, and...2024-07-0332 minThe Neurological Disorder Podcast15. Here's an Ally: The Spero Clinic ft. Dr. Katinka van der MerweSend us a textThis week's episode is with Dr. Katinka van der Merwe, a Doctor of Chiropractic who focuses on nervous system rehabilitation to help those suffering from chronic pain. She grew up just outside of Johannesburg, South Africa, and immigrated to the United States to receive her Doctor of Chiropractic degree. Since then, she has received numerous awards for her work, including the prestigious Global Chiropractor of the Year award in Atlanta, Georgia, and the Award of Innovation for her ongoing work with RSD/CRPS patients in Los Angeles. In addition...2024-06-0536 minThe Neurological Disorder Podcast14. Here's an Ally: Syngap1 Foundation ft. Monica Dudley-WeldonSend us a textToday's episode features Monica Dudley-Weldon! Not only is she the founder and CEO of the Syngap1 foundation, but she also has a background in biology and teaching and attended Law School. Her son, Beckett, was the 6th person in the world and 3rd in the United States to be diagnosed with Syngap1-Related Disorder, an intellectual disorder often accompanied by autism, epilepsy, and other behavioral abnormalities. In this episode, Monica delves into the relatively unknown symptoms of this condition and treatments, such as ASOs (Antisense Oligonucleotide Therapy), that are currently being re...2024-05-201h 00