In our world it is increasingly difficult for physicians, clinicians, and researchers to pursue much needed life-changing discoveries because of financial and administrative barriers. This is especially true when it comes to a disease as rare as superficial siderosis.
Working in partnership with the Superficial Siderosis Patient Registry and Living With Superficial Siderosis, alliance founders Kyle and Susan Dempsey, have envisioned a true collaborative effort. The Superficial Siderosis Research Alliance mission is simple.
To seek, raise and provide funding in support of medical research for the benefit of the rare disease community affected by the neurodegenerative disease superficial siderosis and the identified symptoms brought on by this disease such as ataxia, hearing loss, and myelopathy.
The Superficial Siderosis Research Alliance should be recognized as a fully registered 501(c)(3) charitable organization in the fall of 2019 in accordance with U.S. IRS Code section 170. Donors may take deductions once 501(c)(3) status is granted for contributions made during the interim fundraising period.