The Neurological Disorder Podcast

• 24. Here's an Ally: ParkingNSites ft. Jawanza Lamar

  Send 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 Atlanta. Jawanza shares how he is using technology to address this issue and is collaborating with city officials to raise awareness and drive community involvement to make meaningful change. We also discuss the policies he hopes to see improved in the coming years and his vision for the future of ParkingNSites.Make sure to subscribe to The Neurological Disorder Podcast on Spotify, Apple Podcasts, or wherever you listen to your podcasts!Follow me on Instagram-@neurologicaldisorderpodcastEmail me at- [email protected] Resources:https://www.parkingnsites.com/

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• 23. Here's an Ally: Dravet Syndrome Foundation ft. Mary Anne Meskis

  Send 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 remains a significant challenge, which we dive into in this episode.Mary Anne and I discuss the critical gap in Dravet syndrome research and how DSF bridges it by increasing research funding and supporting initiatives like the Dravet Genome Study. She also shares how her team simplifies complex scientific information to make it more accessible to families and the broader community. Additionally, we explore DSF's new legislative advocacy program and her vision for the organization's future.Make sure to subscribe to The Neurological Disorder Podcast on Spotify, Apple Podcasts, or wherever you listen to your podcasts!Follow me on Instagram: @neurologicaldisorderpodcastEmail me at: [email protected] Instagram: @dravetsyndromefoundationHelpful resources:https://dravetfoundation.org/https://www.ninds.nih.gov/health-information/disorders/dravet-syndrome

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• 22. Here's an Ally: National Brain Tumor Society ft. Tom Halkin

  Send 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 research and their role in launching the first-ever adaptive clinical trial for brain cancer.We also discuss their innovative initiatives to simplify and share complex brain tumor information, including MyTumorID, allowing patients and families to make informed decisions about their care. Additionally, Tom highlights issues in current healthcare policy for brain tumor treatment and shares how individuals from all backgrounds and communities can help support the BRAIN Act and related policies to raise awareness and increase support for brain tumor research and advocacy. His thorough responses offer valuable insights into the organization's future goals, focusing on legislative advocacy, raising public awareness, and increasing access to brain tumor treatment.Make sure to subscribe to The Neurological Disorder Podcast on Spotify, Apple Podcasts, or wherever you listen to your podcasts!Follow me on Instagram: @neurologicaldisorderpodcastEmail me at: [email protected] Instagram: @natlbraintumorsocietyHelpful Resources:https://braintumor.org/https://www.hopkinsmedicine.org/health/conditions-and-diseases/brain-tumor

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• 21. Here's a Warrior: Multiple Sclerosis & Type 1 Narcolepsy ft. Nicole Kenyon

  Send 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, drawing from her experiences. Beyond her personal journey, Nicole discusses her impactful work supporting  others, including advocating for legislation on Capitol Hill that assists individuals living with MS and Narcolepsy. Her dedication to helping others, whether organizing community fitness events or engaging in personal conversations, is truly inspiring. Make sure to subscribe to The Neurological Disorder Podcast on Spotify, Apple Podcasts, or wherever you listen to your podcasts!Follow me on Instagram: @neurologicaldisorderpodcastEmail me at: [email protected] Nicole on Instagram: @fitniknarcolepticHelpful resources:https://my.clevelandclinic.org/health/diseases/17248-multiple-sclerosishttps://my.clevelandclinic.org/health/diseases/12147-narcolepsy

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• 20. Here's a Warrior: Traumatic Brain Injury ft. Erica Renee Walker

  Send 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. Additionally, we touch on the importance of finding community and support for those recovering from brain injuries, and Erica concludes with some inspiring advice for anyone going through similar challenges.Make sure to subscribe to The Neurological Disorder Podcast on Spotify, Apple Podcasts, or wherever you listen to your podcasts!Follow me on Instagram-@neurologicaldisorderpodcastEmail me at- [email protected] Resources:https://www.ninds.nih.gov/health-information/disorders/traumatic-brain-injury-tbihttps://www.cdc.gov/traumatic-brain-injury/index.html#:~:text=A%20traumatic%20brain%20injury%2C%20or,disability%20in%20the%20United%20States.

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