FOR IMMEDIATE RELEASE Bethesda, MD, November 7, 2024 — Today marks a significant milestone for The Stiff Person Syndrome Research Foundation (The SPSRF) as it celebrates its fifth anniversary. Founded by SPS patient and advocate Dr. Tara Zier, The SPSRF has spent five transformative years advancing research, raising awareness, and supporting the SPS community globally. The Foundation is dedicated to finding effective treatments and a cure for Stiff Person Syndrome (SPS), a rare and often debilitating neurological disorder that impacts a person’s ability to move freely without severe muscle spasms and pain.
In this span, the SPSRF has achieved notable accomplishments demonstrating its commitment to transforming the lives of SPS patients. Highlights from the past five years include:
Formation of an Expert-Led Advisory Network: Establishing a Medical Advisory Board and a Patient Advisory Committee, which guide research priorities, support patient advocacy, and expand the reach of SPS resources.
Research Funding Initiatives: Providing early financial support to The Johns Hopkins SPS Center, laying the groundwork for groundbreaking research initiatives.
Significant Funding Support from the Chan Zuckerberg Initiative (CZI): Receiving a pivotal grant from CZI’s Rare As One program to accelerate organizational growth and impact.
Raising Awareness through Global Media: Through numerous interviews on TV, radio, and other news outlets, the SPSRF has raised awareness for SPS, a rare disease often misdiagnosed or misunderstood.
Hosting the Annual SPS Symposium: Establishing the SPS Symposium as an annual event that brings together patients, researchers, caregivers, and advocates worldwide to advance the conversation on SPS research and care.
Development of Online Resources: Launching an online SPS Physician Registry to help patients find specialized care and laying the foundation for the upcoming SPS Global Patient Registry in partnership with the National Organization for Rare Disorders (NORD)
Diagnostic Advancements: Initiating the Consensus on SPS Diagnostic Criteria, a project that aims to improve diagnosis accuracy and speed for SPS patients globally.
New Research Resources: Publishing a comprehensive SPS Literature Review on The SPSRF website, offering up-to-date research findings to the community.
Reflecting on this milestone, Dr. Tara Zier, Founder and CEO of The SPSRF, said,
“This five-year journey has been extraordinary, and we’ve accomplished more than I imagined possible in this short time. The support and resilience of the SPS community inspire us to push harder each day. None of this progress would have been possible without our incredible network of patients, families, researchers, and supporters. Together, we are not just making strides for SPS research; we are changing the future for those living with this condition.”
The SPSRF is poised to continue its mission with even more significant momentum. In January, the Foundation will announce several new initiatives to further research, enhance patient resources, and expand community support.
Join Us in Our Mission The SPSRF invites everyone to support its ongoing work to advance SPS research and improve the lives of those affected by this rare disease. Donations can be made through The SPSRF’s website at www.stiffperson.org/donate.
About The Stiff Person Syndrome Research Foundation The Stiff Person Syndrome Research Foundation is the leading organization dedicated to funding research, raising awareness, and supporting the community affected by Stiff Person Syndrome. As a 501(c)(3) non-profit, The SPSRF’s mission is to transform the lives of SPS patients by advancing research for better treatments and, ultimately, a cure.
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