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 […]
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 […]
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 […]
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 […]
Our First-Ever Superficial Siderosis Symposium 2025 We are thrilled to announce the Superficial Siderosis Symposium 2025, an extraordinary event hosted by the Superficial Siderosis Research Alliance (SSRA). This inaugural conference will occur at the prestigious Loeb House from June 11 to June 13, 2025. Please consider joining us for this informative event in Cambridge, Massachusetts. A Historic Venue: Loeb House […]
We’re excited to announce the 3rd Annual Trail Grinder Run, Sponsored by Caffe Crema and benefiting the Superficial Siderosis Research! The event will happen on Saturday, September 28th, at the Atlanta MTB Trail in Atlanta, Texas. It will offer a choice of 5K, 10K, and 30K runs—something for everyone, from beginners to seasoned trail runners. Caffe’ Crema is a local East Texas […]
Game Train USA Driving December SS Awareness Game Train USA believes by championing local nonprofits and the causes they support is how they can give back to the community in a very big way. We’re proud to announce the Rocky Mountain Superficial Siderosis Research Alliance has been chosen as their featured charity for the month of December. We would like […]
