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Stiff Person Syndrome Research Foundation @TheSPSRF

Finding a cure for Stiff Person Syndrome through RArE: Research, Awareness, and Education. #sps #TheSPSRF

Joined July 2020
  • Tweets 531
  • Following 153
  • Followers 487
259 Photos and videos
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
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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.
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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.
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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
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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=Cf8qFjex… #thespsrf #SPSResearch #cuanshutz #ResearchInnovation

CU Anschutz: Leading the Way in Autoimmune Neurology and Stiff Person...

CU Anschutz focuses on clinical advancements and research, with not...

youtube.com
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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
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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
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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.co… or email ClinicalTrialsInfo@kyvernatx.com for info.
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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
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Want to help find better treatments for SPS? Here's your chance! Check out the flyer below and visit stiffpersonsyndrometrials.co…. Questions? Email Kyverna at: ClinicalTrialsInfo@kyvernatx.com #ClinicalTrials #SPSResearch #KyvernaTherapeutics #StiffPersonSyndrome
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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
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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
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Just a few hours left to double your impact! There’s still time to make a difference on #GivingTuesday. Please help us reach our goal and support critical SPS research. Donate now at: stiffperson.org/donate #EndSPS #TheSPSRF
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#GivingTuesday Midday Progress Update We’re halfway through GivingTuesday! Can we count on you to help us reach our goal? Every dollar raised gets us closer to better treatments and patient care. Donate here: stiffperson.org/donate #GivingTuesday #TheSPSRF
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Today’s the Day! It’s #GivingTuesday, and now’s the time to make a difference for the SPS community. Your gift will fund research, resources, and support for SPS patients. Donate now: stiffperson.org/donate #EndSPS #TheSPSRF #GivingTuesday
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Tomorrow is #GivingTuesday!We’re excited to kick off a powerful day of giving that can bring hope and resources to SPS patients and families. Whether $10 or $1,000, every donation counts toward funding research and support. Will you join us ?Donate here stiffperson.org/donate
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Mark your calendars! Just 4 days until #GivingTuesdayon December 3rd! Stiff Person Syndrome is rare, but the impact is profound—and we’re working to change that. This Giving Tuesday, join us in supporting research, resources, and hope for those facing SPS.
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This Thanksgiving, we’re grateful for you! To our incredible supporters, advocates, and friends: thank you for standing with The SPSRF and the SPS community. Your support fuels our mission to fund research, provide resources, and bring hope to those affected by SPS. Thank you!
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Make An Impact on #GivingTuesday! On December 3rd, we’ll embark on an ambitious goal to raise $60,000! And thanks to a group of The SPSRF volunteers, we’ve already had nearly $15,000 committed to our goal! Join this group in making a difference on GivingTuesday!
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Only 10 Days Until #GivingTuesday! On December 3rd, join us for GivingTuesday and help make a difference in the lives of those facing SPS. Every dollar raised will support research, resources, and connections for SPS patients. Are you ready to help The SPSRF make a difference?
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