OUR VISION is a future where a Superficial Siderosis diagnosis is no longer a life-altering condition. OUR MISSION is education, advocacy, seeking, and providing funding support for all superficial siderosis medical research for the benefit of every person affected by this ultra-rare neurodegenerative disorder.
What if researchers could identify a way to give your body a fighting chance?
Take support to the next level.
We’re proud to have allocated $100,000 to the Superficial Siderosis Clinic and Laboratory at Massachusetts General Hospital, thanks to the generous contributions from our corporate partners and individual benefactors. Our research committee, a diverse group of top-tier researchers, patients, caregivers, and advocates, ensures a holistic approach to study design. We harness the power of social media to reach individual donors and collaborate with volunteer-sponsored local events, such as 5 K fun runs, trail runs, silent auctions, and t-shirt sales. Join us in our mission to make a difference.
Support special exhibitions.
The SSRA plays a crucial role in promoting the development of the SS research infrastructure. We funded the creation and administration of the global Superficial Siderosis Patient Registry. As a research sponsor, we also shape targeted clinical research protocols, budgets, and project administration. Livingwithss.com is a digital magazine that keeps you informed and connected. We strive to bring you the latest medical updates, stories from our community, and a platform to connect with those who truly understand your journey. Dive in and discover a world of knowledge and support.
Enrich our growing community.
Our mission at the SSRA is to champion the patient community. We employ practical strategies to raise awareness of superficial siderosis within the medical community and the broader public. Our US, Canada, UK, and Australian volunteers leverage SSRA-approved print materials, grassroots outreach, social media, and educational websites to inform and engage. We are a 100% volunteer organization run by patients, caregivers, and friends. Our commitment to transparency, patient privacy, and sharing the most up-to-date, approved medical information distinguishes us.
London is calling! The Superficial Siderosis Research Alliance is excited to announce that our next Superficial Siderosis Symposium is planned for June 2028 in London. Our Board of Directors has vo…
Fifth Annual Trail Grinder Benefit Run Supports Superficial Siderosis Research Runners on the trail The fifth annual Trail Grinder brought runners, volunteers, and sponsors together on Septembe…
Discover how the Superficial Siderosis Research Alliance (SSRA) is turning Giving Tuesday generosity into groundbreaking rare disease research, patient support, and advocacy progress. What is Givin…
1951 – 2025 Uriel Chaim Goldberg, Ph.D., was a gifted scientist, an innovative engineer, and a man of quiet integrity whose final act of generosity will continue to advance the understanding of Su…
Racing Together for Superficial Siderosis Research Every September, the Superficial Siderosis Research Alliance (SSRA) invites our community to come together for the Annual Trail Grinder Benefit Ra…
How Scientists, Clinicians, and Patients Are Charting a New Course for Superficial Siderosis On June 13, 2025, the final morning of the Superficial Siderosis Symposium, neurologists, a neurosurgeon…
