OUR VISION is a future where a Superficial Siderosis diagnosis is no longer a life-altering condition.
OUR MISSION is education, advocacy, and seeking, raising, and providing funding support for all superficial siderosis medical research for the benefit of every person affected by this ultra-rare neurodegenerative disorder.
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 like 5k fun runs, trail runs, silent auctions, and t-shirt sales. Join us in our mission to make a difference.
Support special exhibitions.
The SSRA is instrumental in fostering the growth 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 use practical strategies to enhance awareness of superficial siderosis within the medical fraternity and the wider 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 sets us apart.
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 …
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 Atlant…
Empowering Voices: Advocacy and Awareness on Rare Disease DayRare Disease Day is a powerful platform for advocacy and awareness, empowering the voices of those living with conditions like Sup…
By Jeffery NewholmA conversation with Wes Hale, rare disease warriorAs February, Rare Disease Month, nears its conclusion, the crusade against Superficial Siderosis is taking …
Does Ferroptosis Hold the Answer?In the shadows of neurological disorders lies superficial siderosis, a condition that silently wreaks havoc on the brain and spinal cord. The culprit? Iron. Its ac…
