The Stiff Person Syndrome Research Foundation

We're proud to share Valerio's inspiring story about his journey with Stiff Person Syndrome (SPS), as featured in an interview on Osservatorio Malattie Rare. Valerio speaks about the challenges of living with SPS and how finding a doctor who understood the condition changed his life. His story underscores the importance of awareness and medical expertise in rare diseases like SPS, which affects individuals globally. View the original version here: https://lnkd.in/et4fp8-s... Note: While the article was written in Italian, many web browsers offer translation options, allowing you to read Valerio's powerful account in your preferred language. #spsawareness #SPS #stiffpersonsyndrome #GlobalHealth #thespsrf

We're honored to share Andrea Schouw-Naphegyi's journey with Stiff Person Syndrome (SPS), featured in an interview with a Hungarian television program in Romania. Andrea's story highlights how SPS affects individuals far beyond the U.S., underscoring the global nature of this rare and challenging disease. Watch her candid interview, with English subtitles, to learn more about her experiences and the impact SPS has on lives worldwide. https://lnkd.in/eA-6iR8u #SPSResearch #TheSPSRF #GlobalAwareness #StiffPersonSyndrome #RareDisease

Mark your calendars! We’re excited to announce that the 9th Annual Stiff Person Syndrome Symposium will take place on July 19-20, 2025, in Windsor Locks, CT & Online. This event will bring together experts, patients, and advocates to share the latest advancements in SPS research and care. Stay tuned for updates on topics and presenters—we can’t wait to share more with you! #spsrf #spscommunity #SPSResearch #spsawareness #spssymposium #stiffpersonsyndrome

We're excited to share a recent interview with The SPSRF Founder, Tara Zier, on The Evan Bray Show! Listen in as Tara shares her SPS journey, the challenges those living with SPS face, and the crucial work The SPSRF is doing to advance research. Don't miss this opportunity to learn more about our impact. Listen to the full interview here: https://iono.fm/e/1475831. #SPSAwareness #TheSPSRF #StiffPersonSyndrome #ResearchMatters #SupportTheCause

The SPSRF recently had the honor of presenting at the SPS Consortium to discuss The SPS Global Registry. This event, held in mid-July before the beginning of the AAN Conference in Atlanta, GA, included international clinicians and researchers joining in person and virtually. Those pictured below include (from left to right): * Anastasia Zekeridou, MD, PhD * Jacqui Kraska, MA * Angela Vincent, FMedSci FRS * Yujie Wang, MD * Andrew McKeon, MD * Maarten Titulaer, MD, PhD * Bettina Balint, MD * Stacey Clardy, MD, PhD * Amanda Piquet, MD * Rachel Brown * Tara Zier, DDS * Scott Newsome, DO The meeting was filled with insightful questions, valuable input, and a collaborative spirit that energized our efforts. We're grateful for the support and engagement from such a dedicated group of experts. Special thanks to Dr. Newsome for introducing The SPSRF to the Consortium and his ongoing support. Here's to advancing SPS research and making a difference together! #SPSResearch #TheSPSRF #Collaboration #GlobalRegistry #SPSConsortium #MedicalResearch

Last week, our own Tara Zier participated in the first-ever patient panel at the American Academy of Neurology (AAN) meeting in Atlanta, GA. The patient panel, organized by The Sumaira Foundation, represented a critical step in sharing patient perspectives and lived experiences to guide future R&D efforts and generate real-world evidence for therapeutic advances. #SPS #thespsrf #patientcentricity #raredisease #aansc #10yearsoftsf

As a member organization of National Organization for Rare Disorders, Inc. (NORD), The SPSRF is pleased to share the information below with SPS-community members looking for additional educational support programs. These courses are designed for those diagnosed with a rare disease and immediate family/caregivers. Visit https://lnkd.in/ecWbpJ2q for more information Note: The SPSRF is NOT associated with these education courses in any way. For additional information and a list of topics covered, contact NORD, RD Education Program, at 860.556.2208 or email (rdeducate@rarediseases.org). #spsrf #SPS #NORD #educationmatters

This Memorial Day, we honor and remember the brave men and women who served our country. #ThankYouVeterans

We're excited to share that The New England Journal of Medicine, one of the most prestigious and widely read medical journals in the world, recently featured a two-part case study on Stiff Person Syndrome (SPS). This is a significant step forward in raising awareness about SPS, as The New England Journal of Medicine reaches over 600,000 physicians and medical professionals globally. The publication supports our goal of ensuring critical SPS information is disseminated widely across the medical community. The links to the articles are below: Part 1: https://lnkd.in/e6Bi3_FF Part 2: https://lnkd.in/eWvz3P23 #SPSRF #StiffPersonSyndrome #SPSAwareness #MedicalResearch #NEJM

Please give a round of applause to our 2024 SPS Symposium Committee: David Axelrod (Committee Chair), Mary Elizabeth Marvin, Tom Wilson, Shannon Gibbons, Matthew E Peterson, Neil Mathis, and Tara Zier. Thank you for your commitment to make the 2024 event a success!