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 voted to move forward with planning, and a planning committee is now at work organizing the two-day event. Exact dates [...]
Read MoreFifth 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 September 5, 2026, at Atlanta MTB Trail in Atlanta, Texas. Organized by Tanya Beers and sponsored by the Superficial Siderosis Research Alliance, the benefit [...]
Read MoreDiscover how the Superficial Siderosis Research Alliance (SSRA) is turning Giving Tuesday generosity into groundbreaking rare disease research, patient support, and advocacy progress. What is Giving Tuesday and Why It Matters for Rare Diseases Every year, after the excitement of Black Friday and Cyber Monday, comes a day dedicated to [...]
Read More1951 – 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 Superficial Siderosis. Uriel earned his Ph.D. in Physics in 1984, building a lifelong career studying turbulence and fluid [...]
Read MoreRacing 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 Race for Superficial Siderosis, one of the most meaningful events of the year. What began as a local run in East Texas has now [...]
Read MoreHow 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, an MRI researcher, a hematologist, a specialist in audiovestibular Medicine, a clinical fellow in neurology, and audience members gathered together at the [...]
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The Superficial Siderosis Research Alliance was recently awarded a 2019 Bronze Seal of Transparency by GuideStar. Our up-to-date Nonprofit Profile on GuideStar guarantees the SSRA is committed to open and transparent sharing of our fundraising activities, projects, and financial information. Now our community members, as well as 10+ million GuideStar users, can find out more about our mission and programs. […]
Deciding to Start a Charity is a Tough Decision I remember when we heard our daughter had Superficial Siderosis several years ago, we did not know what to do or think. She had no symptoms, she had been in a car accident about four years prior and we had scheduled an MRI because another doctor noticed her tongue had some […]
WHAT IF RESEARCHERS COULD IDENTIFY A WAY TO GIVE YOUR BODY A FIGHTING CHANCE? Research takes a very long time, so as hard as it may be to face, even though some of our SS community friends will never experience the benefits, you still have an opportunity to contribute. To make a difference to those who follow with a real […]
Natural History Study Of Superficial Siderosis Knowledge of natural history is essential for developing more efficient clinical trial designs. It also could help reduce the length and cost of drug development and, possibly, contribute toward greater predictability of clinical development programs. -Janet Woodcock, M.D., Director of FDA’s Center for Drug Evaluation and Research (CDER)
