Stiff Person Syndrome Research Foundation

You submitted 200+ questions at the 2026 #SPSSymposium — incredible! Personal email responses are coming, plus a full Q&A summary online. Each answer is reviewed by an SPS expert, so give us a little time to get it right. Thank you! #SPSRF

A huge thank you to Jaye Bea Smalley, Executive Director of Patient Advocacy at @KyvernaThera, for leading our community through the "Your Voice, Your Impact" workshop at the 2026 #SPSSymposium! 💙 #SPSRF #PatientAdvocacy #StiffPersonSyndrome

All sessions from the 2026 #SPSSymposium were recorded and will be available to watch online! We'll share the link as soon as they're ready. Follow us for updates! #SPSRF #StiffPersonSyndrome

Share your 2026 #SPSSymposium photos and videos with us! Tag us or send to info@stiffperson.org — we'd love to share your moments with the community! #SPSRF #StiffPersonSyndrome

We invite all 2026 SPS Symposium attendees to complete the "Your Voice, Your Impact" survey, led by Jaye Bea Smalley, Executive Director of Patient Advocacy at Kyverna. Open to both in-person and virtual attendees — closes June 27, 2026. → wkf.ms/4dY4un8

Online SPS Survey Attendees Survey: Did you watch the 2026 #SPSSymposium online? Please take a moment to share your feedback before June 27th! Survey For Online Attendees: wkf.ms/4alGfwM #StiffPersonSyndrome #SPSRF #SPSSymposium #YourVoiceMatters

In-Person SPS Survey Attendees Survey Did you attend the 2026 #SPSSymposium in person? Please take a moment to share your feedback before June 27th! Survey For In-Person Attendees: wkf.ms/4ojxxoI #StiffPersonSyndrome #SPSRF #SPSSymposium #YourVoiceMatters

What an incredible weekend at the 2026 SPS Symposium! Thank you to every attendee — in person and virtual — and a huge shoutout to Dr. Amanda Piquet and the team at @CUAnschutz for hosting and volunteering. We are so grateful! #SPSRF #StiffPersonSyndrome

Kyverna Therapeutics Reports Positive Phase 2 Topline Data in Stiff Person Syndrome (SPS). This positions miv‑cel to become the first FDA‑approved CAR T‑cell therapy for an autoimmune disease, with Kyverna planning to file a BLA in the first half of 2026. tinyurl.com/yrzcxrn7

The SPSRF was proud to be represented last week at the 2025 CZI Rare As One Network meeting. We're honored to be part of a network that believes in the power of community-driven science and to contribute the voice of the SPS community to this important dialogue.

Today, we pause to remember and honor the brave men and women who gave their lives in service to our country. Their sacrifice allows us the freedom to come together as a community and continue our mission with purpose and hope.

In this honest and moving account, SPS Patient Julie S. shares what it’s like to lose the life you knew and slowly rebuild something new with courage, community, and care. Read her story here: tinyurl.com/2fcu2v2c #spsawareness #raredisease #SPS

Check out this video from CU Anschutz highlighting their latest research on SPS. Kudos to our very own Medical Advisory Board member, Dr. Amanda Piquet, who is leading the way in this research! youtube.com/watch?v=Cf8qFj… #thespsrf #SPSResearch #cuanshutz #ResearchInnovation

While attending the American Academy of Neurology sessions, Tara Zier connected with world-class clinicians and researchers advancing the science of SPS, including Dr. Bettina Balint, Dr. Scott Newsome, Dr. Yujie Wang, Dr. Amanda Piquet, and Dr. Shuvro Roy. #AAN2025 #CARtTherapy

This past week, The SPSRF’s Tara Zier had the opportunity to participate in a SXSW panel conversation hosted by Katie Couric to raise awareness of SPS and the broader rare disease community on such a prestigious stage. #SXSW #RareDisease #SPSAwareness #TheSPSRF #ScienceForAll

We’re proud to share that Dr. Piquet, Dr. Dalakas, and Dr. Zekeridou, key contributors to our mission, are serving as Principal Investigators for the KYSA-8 clinical trial. Learn about the trial at stiffpersonsyndrometrials.com or email ClinicalTrialsInfo@kyvernatx.com for info.

The 2024 SPS Symposium was groundbreaking, bringing together world-class researchers, patients, and industry leaders for two days of collaboration, innovation, and progress in the fight against SPS. Download our 2024 Success Packet PDF here: tinyurl.com/4t8vm8cb

Want to help find better treatments for SPS? Here's your chance! Check out the flyer below and visit stiffpersonsyndrometrials.com. Questions? Email Kyverna at: ClinicalTrialsInfo@kyvernatx.com #ClinicalTrials #SPSResearch #KyvernaTherapeutics #StiffPersonSyndrome

Thank You to our incredible community of supporters! Because of your generosity on #GivingTuesday, we’re one step closer to funding critical research for Stiff Person Syndrome. We’re so grateful to have you with us on this journey! #ThankYou #EndSPS #TheSPSRF

There’s still time to make a difference! Every bit of support helps us fund research and provide resources for SPS patients. If you couldn’t give earlier, there’s still a chance to help today. Donate here: stiffperson.org/donate #TheSPSRF #GivingBack