The Stiff Person Syndrome Research Foundation

Exciting News for our SPS community! Kyverna Therapeutics Reports Positive Phase 2 Topline Data in Stiff Person Syndrome (SPS) Kyverna Therapeutics announced today that its registrational Phase 2 trial (KYSA‑8) of mivocabtagene autoleucel (miv‑cel) showed strong positive results in people with Stiff Person Syndrome (SPS). The data met both primary and secondary endpoints, demonstrating statistically significant clinical benefits and improvements in key mobility and disability measures after a single dose. This cell therapy was generally well‑tolerated with no high‑grade safety issues reported. These results position miv‑cel to become the first FDA‑approved CAR T‑cell therapy for an autoimmune disease, with Kyverna planning to file a Biologics License Application (BLA) in the first half of 2026. https://lnkd.in/gN3kSViK #SPS #raredisease #biotech #ClinicalTrials #spsrf #kyverna

SAVE THE DATE - 2026 SPS Symposium 🗓 June 13–14, 2026 📍 Aurora, CO (Denver) 🏫 University of Colorado Anschutz Medical Campus 🧡 Hosted by The SPSRF and CU Anschutz Join us for the 2026 SPS Symposium — a global gathering for learning, connection, and action. More details coming soon! #SPS2026 #thespsrf #spssymposium2026 #UCAnchutz

WOW! Thanks to the strength and generosity of our community, $10,924 was donated to The Stiff Person Syndrome Research Foundation on #GivingTuesday to support SPS research and care. That’s $10,924 to fuel: The SPS Global Registry & Biorepository The Diagnostic Criteria & Treatment Guideline Initiatives Patient support resources and clinician education Real momentum toward better treatments We don’t take this lightly. This is a statement! It says: The SPS community leads. It says: We are building this movement together. And it says: We are not done yet. Thank you for standing with us. Let’s keep going! #EndSPS #ThisIsOurFight #TheSPSRF #RareDisease #GivingTuesday #ThankYou #SPSCommunity #WeLead

Where does your donation go? Here’s exactly how it fuels progress. We don’t just hope for better treatments. We’re building the roadmap to get there — and it’s bold. From launching the SPS Global Registry to developing the first-ever SPS Diagnostic Criteria and Treatment Guideline, The SPSRF’s strategic plan lays out a clear, global path forward for research, care, and community support through 2029. View our Strategic Goals Summary (2026–2029): https://lnkd.in/eqtZmXnc Donate to support The SPSRF’s work, then share this post — because awareness is power. #ThisIsOurFight #EndSPS #SPSCommunity #GivingTuesday #TheSPSRF #RareDisease #SPSResearch #StrategicPlan #PatientLed

It’s Giving Tuesday. And this is OUR fight. We know how hard it is to hear another ask for donations — especially in a community where so many are unable to work because of the very disease we’re fighting. But this is the reality of rare disease: If we don’t fund SPS research, who will? Today, we launch our year-end campaign to raise funding for SPS research. Your donation fuels: ✅ The SPS Global Registry + Biorepository ✅ Publication of SPS Diagnostic Criteria ✅ Development of SPS Treatment Guidelines ✅ The largest SPS Symposium ever planned We aren’t waiting for change — we’re building it. Together. Donate now at: https://lnkd.in/eKTcKuQr Follow, share, and help spread the word. This is our fight. Let’s show the world we lead from the front! #GivingTuesday #EndSPS #RareDisease #TheSPSRF #StiffPersonSyndrome #ThisIsOurFight #SPSCommunity#SPSResearch #StrategicPlan #PatientLed

We’re so grateful for the opportunity to be part of The Sumaira Foundation's Patient Day for Rare Neuroinflammatory Disorders in Chicago! The SPSRF Founder, Tara Zier, had the chance to connect with Dr. Augusto Miravalle, a well-known and respected voice in neuroimmunology, and Carlos Eduardo Gouvêa, a passionate advocate and key leader in the SPS community in Brazil. A heartfelt thank you to Sumaira Ahmed and The Sumaira Foundation for hosting such a meaningful, community-centered event—and for including us in the conversation. These moments of connection fuel the progress we’re all working toward! #TheSPSRF #TSFPatientDay #SPSAwareness #GlobalAdvocacy #RareDiseaseCommunity #StrongerTogether #AutoimmuneNeurology

At The Sumaira Foundation’s Patient Day for Rare Neuroinflammatory Disorders, Tara Zier, Stephanie Pollock, and Fiorella Ghiorsi shared their journeys during the panel “Living with AE & SPS: Patient Perspectives”, moderated by Margaret (Meg) Poe from the Autoimmune Encephalitis Alliance. It was especially meaningful to see Stephanie, who also joined us at the SPS Symposium in CT, continuing to raise awareness and advocate for others living with Stiff Person Syndrome. These stories are powerful—and they're shaping the future of support, care, and understanding. #TheSPSRF #SPSSymposium #TSFPatientDay #SPSAwareness #AEAwareness #PatientVoices #RareDiseaseCommunity #StrongerTogether

At The Sumaira Foundation’s Patient Day for Rare Neuroinflammatory Disorders in Chicago, The SPSRF founder Tara Zier had the honor of joining a powerhouse panel of patient advocates for “Living with Rare Neuroinflammatory Disorders: Patient Perspectives.” Moderated by Marion Jones, MPA, the panel featured Tressa Epps, Noah Nabak, Kina Peppers, MD FACOG (Dr. Kina MD), @contactcourtneygsmith, and Tara; each sharing their journeys, lessons learned, and words of encouragement for those newly diagnosed. Together, they reminded us that healing doesn’t come only from medicine. It also comes from community, shared experience, and support. #TheSPSRF #SPSSymposium #TSFPatientDay #PatientPerspective #RareDiseaseCommunity #StrongerTogether

Last weekend, The SPSRF founder, Dr. Tara Zier, participated in the “Patient Day for Rare Neuroinflammatory Disorders” hosted by The Sumaira Foundation in Chicago. Tara moderated the panel “Understanding AE and SPS: Clinician Perspectives” alongside two incredible advocates: * Dr. @Veronica Cipriani, who shared expert insight on diagnosing and treating Autoimmune Encephalitis (AE) Dr. Carolyn Goldschmidt, who did the same for Stiff Person Syndrome (SPS) Both clinicians brought clarity, compassion, and a deep commitment to patient care. We’re grateful for their voices—and proud to see SPS represented in broader neuroimmunology conversations. #TheSPSRF #StiffPersonSyndrome #AEAwareness #NeuroinflammatoryDisorders #RareDiseaseCommunity #StrongerTogether #TSFPatientDay

Thank you to our 2025 SPS Symposium sponsors! We are incredibly grateful to the organizations that helped make the 2025 SPS Symposium possible. Your support is helping bring together patients, caregivers, researchers, and clinicians from around the world to advance understanding, care, and hope for the SPS community. Kyverna Therapeutics Nufactor, Inc. Optum IVX Health Hartford HealthCare BioMatrix Specialty Infusion Pharmacy CSI Pharmacy Aprecia Pharmaceuticals Vital Care of Shelton Thank you for standing with us and investing in the future of Stiff Person Syndrome research and awareness. We couldn’t do this without you! #TheSPSRF #SPSSymposium #SPS2025 #StiffPersonSyndrome #RareDiseaseSupport #ThankYouSponsors #StrongerTogether See less