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 […]
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 […]
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 […]
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 […]
Today marks the beginning of our Spotlight on Superficial Siderosis Week, a special time to raise awareness, share valuable resources, and shine a light on this rare neurodegenerative disorder. We at the Superficial Siderosis Research Alliance (SSRA) are thrilled to kick off this week by announcing an exciting development many of you have eagerly awaited! We are proud to share […]
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 […]
Empowering Voices: Advocacy and Awareness on Rare Disease Day Rare Disease Day is a powerful platform for advocacy and awareness, empowering the voices of those living with conditions like Superficial Siderosis. By sharing stories, fostering community connections, and advocating for policy changes, the rare disease community can effect meaningful progress in the fight against SS and other rare conditions. The […]
