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 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 [...]
Read MoreThe 2025 Superficial Siderosis Symposium Our reception evening on June 11 started with perfect early summer weather. The excitement we felt as SSRA organizers was quickly eclipsed by the arrival of our guests. There was laughter, hugs, and the joy of finally meeting people face-to-face after years of online interactions. [...]
Read MoreLiving With Superficial Siderosis began in 2014 as one small corner of the internet where Gary and I could make sense of two words that had suddenly turned our world upside down: superficial siderosis. Back then, my goal was simple: keep a running journal of Gary’s appointments, the new research [...]
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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 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 giving back: Giving Tuesday. Launched in 2012, Giving Tuesday began […]
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 Superficial Siderosis. Uriel earned his Ph.D. in Physics in 1984, building a lifelong career studying turbulence and fluid dynamics. He devoted his professional life to aerospace engineering and […]
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 Race for Superficial Siderosis, one of the most meaningful events of the year. What began as a local run in East Texas has now grown into a global movement, with participants across the world […]
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, an MRI researcher, a hematologist, a specialist in audiovestibular Medicine, a clinical fellow in neurology, and audience members gathered together at the research roundtable. It set out to answer a deceptively simple […]
The 2025 Superficial Siderosis Symposium Our reception evening on June 11 started with perfect early summer weather. The excitement we felt as SSRA organizers was quickly eclipsed by the arrival of our guests. There was laughter, hugs, and the joy of finally meeting people face-to-face after years of online interactions. I even joked to Rhys’s mom that we might need […]
Living With Superficial Siderosis began in 2014 as one small corner of the internet where Gary and I could make sense of two words that had suddenly turned our world upside down: superficial siderosis. Back then, my goal was simple: keep a running journal of Gary’s appointments, the new research I stumbled across, and the day-to-day triumphs that made a […]
What the SSRA Offers for Superficial Siderosis Patients, Caregivers, and Clinicians At the Superficial Siderosis Research Alliance (SSRA), our mission is to empower patients, caregivers, and medical professionals with the resources and tools they need to better understand, manage, and navigate life with superficial siderosis (SS). Whether you’re newly diagnosed or have been living with SS for years, we want […]
A rare disease diagnosis is never easy for the person receiving it, the family absorbing it, or the doctor delivering the news. Our first instinct is always to search for answers, but for those of us living with or supporting someone with superficial siderosis, those answers are often elusive. At the Superficial Siderosis Research Alliance (SSRA), we understand this journey […]
An Unforgettable Symposium Experience Awaits As we move into the final weeks before the first Superficial Siderosis Symposium, excitement is building across the SSRA community and beyond. What began as a bold idea is now set to become a landmark event in the rare disease world. With over 200 in-person and remote attendees already registered, we are thrilled to witness […]
June 11-13, 2025 | Cambridge, MA Join the Superficial Siderosis Research Alliance (SSRA) for a three-day symposium dedicated to patients, caregivers, clinicians, and researchers focused on advancing care, treatment, and research for superficial siderosis. *Additional speakers are pending confirmation and will be announced as details are finalized. Event Schedule for Activities and Programs Wednesday, June 11, 2025 | Welcome Reception […]
