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 - 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.