The SPSRF Podcast
Explore our new podcast hub—your direct line to the world’s leading experts on Stiff Person Syndrome. In each episode, we sit down with neurologists, researchers, and clinicians to discuss the science, challenges, and breakthroughs shaping the future of SPS diagnosis and care.
Whether you're a patient, caregiver, or medical professional, these conversations are designed to inform, clarify, and inspire. This is where knowledge meets action—tune in and stay connected to the forefront of SPS research and clinical insight.
The SPSRF Podcast - Oct 2026
Navigating Insurance with SPS
Featuring: Tara Zier and Michelle Vogel, IV Solutions Rx
Supporting Documents:
Medicare comes with its own alphabet and its own rules, and for someone newly navigating it with Stiff Person Syndrome, that can be overwhelming. In this episode, Tara Zier talks with Michelle Vogel, from IV Solutions Rx, about the building blocks everyone should understand before making a decision.
Michelle breaks down what Parts A, B, C, and D actually cover, the difference between a copay and coinsurance, and what it means when a drug is or isn’t on a plan’s formulary. She also compares traditional Medicare with Medicare Advantage — including why some major academic medical centers have announced they won’t accept Advantage plans in certain markets going forward — and explains why the very first Medigap plan someone picks can be difficult, and sometimes costly, to change later
In this episode: Parts A–D explained · copay vs. coinsurance · formulary exceptions · traditional vs. Advantage network/out-of-state access · Medigap availability and timing · employer retiree benefits.
In this episode: key enrollment dates and what can change · a one-time no-underwriting Medigap window · rising Part D costs and plans leaving markets · checking coverage directly on Medicare.gov · avoiding broker pitfalls · free state assistance programs.
In this episode: formulary exceptions · avoiding reauthorization delays · timelines by plan type · copay cards (commercial only, not Medicare) · hospital/pharmacy hardship programs and Extra Help · three closing action steps.
The SPSRF Podcast - Oct 2026
Oct 2026: Understanding Insurance and SPS
Featuring: Tara Zier and Dr. Kavita Nair, University of Colorado Anschutz
Supporting Documents:
In the SPSRF’s new podcast focused on insurance & access, founder and CEO Tara Zier sits down with Dr. Kavita Nair, a professor of neurology and clinical pharmacy at the University of Colorado Anschutz, to unpack why getting insurance coverage for Stiff Person Syndrome (SPS) can look so different from more common conditions. Dr. Nair explains how coverage policies are built around clinical evidence, and what happens when a disease is too rare to produce the large trials insurers are used to seeing.
She walks through what “off-label” actually means, why it doesn’t make a treatment experimental or inappropriate, and why a treatment plan a neurologist considers medically necessary can still collide with an insurer’s own coverage criteria. This is the first of a two-part series on insurance and access; a companion conversation with Michelle Vogel of IV Solutions Rx on navigating Medicare is coming soon. Learn more at stiffperson.org.
In this episode: Why insurance policies designed for common conditions don’t translate well to rare diseases like SPS; What it means that there are currently no FDA-approved treatments for SPS; How a smaller clinical evidence base is still legitimate evidence, not a reason for automatic denial; What “off-label” actually means, and why it doesn’t make a treatment experimental; Where a neurologist’s definition of “medically necessary” can collide with an insurer’s coverage criteria; Who shares responsibility for educating payers about rare diseases
In this episode: Why prior authorization exists, and why a complete medical history is the single biggest factor in getting approved; The most common reason approvals get denied (it’s rarely about the medicine itself); How site of care — an academic medical center, a community practice, or a standalone infusion center — can affect scheduling, cost, and continuity of care; Who belongs on a patient’s support team, and what each person actually does; Why having one dedicated point of contact for insurance matters more than a long list of resources; Simple tools for documenting conversations with providers and insurers
In this episode: Why a denial is a starting position, not a final answer; The appeal process, including peer-to-peer and external review, and what makes an appeal stronger; What site-of-care restrictions are, and why they can disrupt continuity of care for SPS patients; What questions to ask before joining a clinical trial, so there are no surprises about access once it ends; Why FDA approval and insurance coverage are two separate milestones, not one; Three concrete steps every listener can take this week.
The SPSRF Podcast - Feb 2026
Feb 2026: Telling Your SPS Story
Featuring:
Neil Mathis and Stephanie Riordan, Sr Dir. of Patient Programs at EveryLife
Supporting Documents:
Share Your Story - Story-Telling Framework (EveryLife)
Share Your Story - Tips to Inspire (EveryLife)
In this podcast episode, Neil Mathis, head of Communications for The SPSRF, and Stephanie Riordan, Senior Director of Patient Programs at EveryLife, discuss the importance of storytelling in the context of Stiff Person Syndrome (SPS) and rare diseases.
Sharing your personal narratives can drive awareness, influence policy, and empower individuals within the rare disease community. The conversation covers common storytelling mistakes, the balance between emotion and facts, and practical frameworks that encourage listeners to embrace your unique stories as a means of connection and advocacy.
The SPSRF Podcast - Feb 2026
Feb 2026: Telling Your SPS Story
Featuring:
Neil Mathis and Stephanie Riordan, Sr Dir. of Patient Programs at EveryLife
Supporting Documents:
Share Your Story - Story-Telling Framework (EveryLife)
Share Your Story - Tips to Inspire (EveryLife)
In this podcast episode, Neil Mathis, head of Communications for The SPSRF, and Stephanie Riordan, Senior Director of Patient Programs at EveryLife, discuss the importance of storytelling in the context of Stiff Person Syndrome (SPS) and rare diseases.
Sharing your personal narratives can drive awareness, influence policy, and empower individuals within the rare disease community. The conversation covers common storytelling mistakes, the balance between emotion and facts, and practical frameworks that encourage listeners to embrace your unique stories as a means of connection and advocacy.
The SPSRF Podcast - Jan 2026
Jan 2026: The SPSD Global Registry
Featuring:
Tara Zier and Dr. Scott Newsome
In this conversation, Dr. Scott Newsome discusses the significance of the SPS Global Registry, emphasizing the importance of patient-reported outcomes and longitudinal data in understanding Stiff Person Syndrome (SPS). He clarifies misconceptions about what a registry is and how it differs from simple surveys.
The discussion highlights the role of patient voices in research, the necessity of large sample sizes for rare diseases, and the potential for registries to lead to better treatments and FDA approvals. Dr. Newsome also addresses who can participate in the registry and the importance of capturing diverse patient experiences to inform future research and treatment options.
The SPSRF Podcast - Episode 1
MARCH 25, 2025
Featuring:
Tara Zier and Dr. Amanda Piquet
Kyverna is proud to sponsor our first podcast featuring Dr. Amanda Piquet, Celine Dion Foundation Endowed Chair and Director of the Autoimmune neurology program at the University of Colorado, and The SPSRF Founder, Tara Zier.
In their conversation, they debunk common misconceptions about Stiff Person Syndrome, share insights on the future of treatments, and provide tools and strategies for patients coping with SPS.
A Woman’s Journey: Healthy Insights That Matter
FEB 27, 2025
Featuring:
Dr. Scott Newsome
In this informative episode of Healthy Insights that Matter, host Lillie Shockney sits down with Dr. Scott Newsome, Director of the Johns Hopkins Stiff Person Syndrome Center and member of The SPSRF Medical Advisory Board. Released on February 27, 2025, the conversation dives into the complexities of Stiff Person Syndrome (SPS), including its symptoms, diagnostic challenges, and the importance of specialized care. Dr. Newsome brings expert insight into the patient experience and the evolving landscape of SPS research and treatment.
Listen to gain a deeper understanding of SPS from one of the field’s leading voices.