Superficial Siderosis Research Alliance jobs and careers

About Superficial Siderosis Research Alliance

The Superficial Siderosis Research Alliance Mission 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. SSRA is a volunteer-driven nonprofit organization. We are actively seeking business or corporate sponsors who understand the importance of building goodwill and engaging with their community on both a local and national level. Now that you know a little about us can we talk about you? This is an opportunity to help our effort either as a donor, corporate sponsor, partner, fundraiser, or volunteer. Our goals may be straightforward but the journey there will be long and expensive. Help us ignite research and join an unstoppable community of giving and support. Superficial siderosis is a slowly progressive chronic neurodegenerative condition due to iron toxicity from persistent subarachnoid bleeding. The human body has a limited capacity to rid itself of blood products in the subarachnoid space, but in ultra-rare cases, chronic or intermittent bleeding over the years to decades eventually leads to overwhelming amounts of toxic iron molecules. These toxic iron molecules are curbed by a protein called ferritin which together form a layer of hemosiderin around the brain, brain stem, spinal cord and optic nerves. Long-term exposure is toxic to the tissue underneath resulting in hearing loss, imbalance, dizziness, weakness, numbness and bowel/bladder dysfunction. Although easily identified by magnetic resonance imaging (MRI), superficial siderosis is often confused for other progressive neurological conditions such as multiple sclerosis, Parkinson’s, or multiple system atrophy. For further information visit: livingwithss.com superficialsiderosispatientregistry.org