Stiff Person Syndrome Research Foundation @TheSPSRF

Finding a cure for Stiff Person Syndrome through RArE: Research, Awareness, and Education. #sps #TheSPSRF stiffperson.org Bethesda, MD Joined July 2020

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Stiff Person Syndrome Research Foundation @TheSPSRF

3 months ago

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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Stiff Person Syndrome Research Foundation @TheSPSRF

3 months ago

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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Stiff Person Syndrome Research Foundation @TheSPSRF

4 months ago

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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Stiff Person Syndrome Research Foundation @TheSPSRF

4 months ago

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

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Stiff Person Syndrome Research Foundation @TheSPSRF

5 months ago

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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Stiff Person Syndrome Research Foundation @TheSPSRF

6 months ago

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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Stiff Person Syndrome Research Foundation @TheSPSRF

7 months ago

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 [email protected] for info.

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Stiff Person Syndrome Research Foundation @TheSPSRF

7 months ago

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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Stiff Person Syndrome Research Foundation @TheSPSRF

8 months ago

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: [email protected] #ClinicalTrials #SPSResearch #KyvernaTherapeutics #StiffPersonSyndrome

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Stiff Person Syndrome Research Foundation @TheSPSRF

9 months ago

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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Stiff Person Syndrome Research Foundation @TheSPSRF

9 months ago

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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Stiff Person Syndrome Research Foundation @TheSPSRF

9 months ago

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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Stiff Person Syndrome Research Foundation @TheSPSRF

9 months ago

#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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Stiff Person Syndrome Research Foundation @TheSPSRF

9 months ago

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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Stiff Person Syndrome Research Foundation @TheSPSRF

9 months ago

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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Stiff Person Syndrome Research Foundation @TheSPSRF

9 months ago

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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Stiff Person Syndrome Research Foundation @TheSPSRF

9 months ago

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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Stiff Person Syndrome Research Foundation @TheSPSRF

9 months ago

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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Stiff Person Syndrome Research Foundation @TheSPSRF

10 months ago

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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Stiff Person Syndrome Research Foundation @TheSPSRF

10 months ago

Why support SPS research? Because there is currently no cure for Stiff Person Syndrome. Funding research is critical to discovering new treatments and improving quality of life. This December 3rd, join us on #GivingTuesday to bring meaningful change to the SPS community.