By Mridula Bharathi
The Neurological Disorder Podcast is a podcast created by Mridula Bharathi, a young changemaker and advocate for neurological disorders. In this podcast, she interviews people who are affected by n
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The podcast currently has 20 episodes available.
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This 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.
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This 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- @neurologicaldisorderpodcast
Email me at- [email protected]
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This 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- @neurologicaldisorderpodcast
Email me at- [email protected]
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This 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- @neurologicaldisorderpodcast
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This 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]
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Today'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 researched. When Monica embarked on her journey to learn more about Syngap1-Related Disorder and advocate for others with this condition, there were only 3 Google pages present, which were solely focused on animal models. Since then, her tireless advocacy has significantly contributed to the plentiful information available on this condition.
In this episode, we dive into Beckett's story and how her son's diagnosis pushed Monica to find more answers to this rare condition. She elaborates on current research on Syngap1, and we also talk about the importance of increased access to genomic testing and newborn screening. Of course, change happens with the legislature, so we talk about her work with Senator Braun on the Promising Pathway Act and the necessity of patients' and caregivers' voices when designing clinical trials. Monica has ambitious goals for extending Syngap1 research to a broader spectrum, so she shares her future plans to expand the world of neurology!
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Today's episode is with Lisa Lauter, a nurse and public health advocate, raising awareness for encephalitis and promoting holistic and conventional medicine approaches to recovery. When she received a devastating diagnosis of autoimmune encephalitis (AE), Lisa deliberately began implementing changes to her diet and mindset and started utilizing holistic health practices, intensive rehabilitation therapy, and conventional medicine approaches to achieve recovery. By making changes one step at a time over a five-year journey to health, she achieved a remarkable recovery.
In this episode, we talk about Lisa's diagnosis journey and specifically focus on the devastating seizures she experienced. She then shares the lifestyle changes she implemented to recover from her encephalitis and talks about the book she is writing to help all seeking to improve their mental and physical well-being. We also discuss the difference between holistic health and Western medicine, and she offers her unique perspective on the two as a nurse and public health advocate. Lisa's strength to recover and create a healthy lifestyle for herself is awe-inspiring, and she continues sharing her health tips through her blog and work with various organizations.
Make sure to subscribe to the Neurological Disorder Podcast on Spotify, Apple Podcasts, or wherever you listen to your podcasts!
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This week's episode is with Levi Peterson, a fighter of Idiopathic Intracranial Hypertension, Neuro-Behçet's syndrome, and Parksinon's disease. Levi has also experienced 10 major brain surgeries, resulting in her becoming an expert on shunting technology from past complications. In the past, she was an EMT, and currently, she is a patient navigator, which we expand on in the episode.
In addition, Levi shares ways she maintained hope and remained strong through her 10 brain surgeries and how she is using her experiences to help other patients currently. We also talk about the numerous complications Levi endured after her invasive surgeries and how artificial intelligence could play a role in the future of shunts. We later discuss the stigma behind IIH and how new research and technology are playing a role in reducing this stigma and increasing awareness of rare neurological disorders. Levi's bravery and strength are incredible, and her humor makes this episode an entertaining listen!
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
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Today's episode is with the CEO and founder of Vistim Labs, James Hamet. In addition to building mind-controlled wheelchairs and ice sculpting, Mr. Hamet focuses on tracking cognitive decline in individuals with neurodegenerative diseases, accelerating diagnosis while allowing for effective disease management in the future. This is done with a technology his company created, which we explore further in this episode.
Currently, treatment for Alzheimer's, Parkinson's, and other neurodegenerative conditions is based on preventing symptoms that arise as the disease progresses. However, Mr. Hamet shares why this approach is inefficient and why early detection of neurodegenerative conditions can significantly improve patients' course of treatment and quality of life. In this episode, we also discuss how visuospatial deficits impact those with Alzheimer's and how Vistim Labs utilizes these to track cognitive decline. Mr. Hamet additionally shares Vistim Labs' goals for the future, as well as his ambitions and past setbacks. With partners from all over the globe, Vistim Labs seeks to expand its clinical utility to other disease categories, like Traumatic Brain Injury and Schizophrenia!
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]
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This week's episode is with Dr. George Ackerman, an attorney and Parkinson's Disease advocate. After being the primary caregiver for his mother, Sharon, who sadly passed away from Parkinson's, Dr. Ackerman strives to help other families experiencing similar struggles. In this episode, Dr. Ackerman starts by sharing heartfelt stories about his mother and the dreadful toll Parkinson's took on her independence and well-being. He later shares the struggles he faced as his mother's primary caregiver and the hardships he and his family experienced, knowing there was no cure for Parkinson's. This leads into our discussion about his inspiration to create Together For Sharon, his website with his mother's story, Parkinson's legislation, and interviews with families and Parkinson's organizations from all over the world. Dr. Ackerman continues to advocate until there is a cure for this terrible disease.
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]
Email Dr. Ackerman at- [email protected]
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The podcast currently has 20 episodes available.