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/

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

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

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

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.

Send 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 while balancing the need for medical treatment—a challenging yet crucial balance for many families to maintain. Additionally, we delve into their advocacy efforts for TSC, their collaborations with organizations like the TSC Alliance, and the promising research currently underway to improve treatment for TSC symptoms. Nic concludes with some powerful and inspiring advice for parents of children who are just beginning to navigate a complex diagnosis.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.tscalliance.org/Instagram: @becketts.beehive

Send 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 and the ASO treatment in clinical trials. We later focus on the necessity of raising awareness for rare conditions, especially H-ABC, as there are only about 200 diagnosed cases, making this condition mainly unknown to the public. She then shares her goals for the future and an inspiring message to families affected by H-ABC.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.h-abc.org/

Send 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 the Patient Helpline and its remarkable growth and evolution through the challenges of COVID-19. In fact, Samantha and her team have helped around 10,000 patients in just 4 years, which is truly incredible. We discuss how her team is structured and what issues they commonly address. She later shares where the Helpline is heading in terms of growth and impact, and we touch on Patients Rising's current policy initiatives and programs.Samantha truly shows an unwavering enthusiasm and deep passion for helping others get the resources they need and encouraging them to advocate for themselves in healthcare settings. We share a few laughs as we talk about the necessity of 'googling workshops' while also exploring the nuances of Medicare's failure to cover medical transportation.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 Samantha Mentioned:https://patienthelpline.org/https://www.patientsrising.org/ 

Send 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 how she works relentlessly to advocate for others with Narcolepsy. Rachel also talks about how her diagnosis of Type 1 Narcolepsy led to her redefining her goals and altering her ambitions to continue leaving a significant impact on society. Additionally, she shares some valuable advice at the end of the episode to anyone who has just received a new diagnosis.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 Rachel Mentioned:https://www.wakeupnarcolepsy.org/https://narcolepsynetwork.org/https://www.hypersomniafoundation.org/  

Send 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, she is a successful author and has recently published a new book, A Paradigm Shift in Treating EDS/POTS,  which focuses on the connection between EDS/POTS and other diseases to improve treatment. Dr. Van der Merwe is also the CEO and founder of The Spero Clinic in Fayetteville, Arkansas, which treats patients from around the world. To date, she has treated patients from 47 US states and 34 countries! She has great success in treating non-retractable pain syndromes and chronic pain.In this episode, Dr. Van der Merwe and I start by exploring the Spero Clinic's Nervous System Rehabilitation program and the variety of unique therapies her clinic offers. She then shares information about Complex Regional Pain Syndrome (CRPS), what makes the condition difficult to diagnose, and the approach she takes to treat the pain. We then dive into her goals for the clinic in the upcoming years, her new book, and how she builds close relationships with all her patients. We also briefly touch on numerous interesting topics, such as medical kidnapping, Long COVID, and hypnotherapy!Additionally,  she shares the mental health and psychological support her clinic offers, as mental health is often intertwined with chronic pain. So, as a warning, there is a brief mention of suicide near the end of this episode. Make sure to subscribe to The Neurological Disorder Podcast on Spotify, Apple Podcasts, or wherever you listen to your podcasts!Follow me on Instagram- @neurologicaldisorderpodcast Email me at- [email protected] Helpful Links:https://www.thesperoclinic.com/More about CRPS