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 […]
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 accumulation triggers reactions that mercilessly damage cells, leading to a cascade of symptoms that strip away hearing, disrupt thought, and unsteady every step. But within this challenge lies an opportunity—an […]
The Superficial Siderosis Research Committee, comprising superficial siderosis experts and patient representatives, recently convened for their summer meeting on June 23, 2023. Multi-National Deferiprone Double-Blind Clinical Trial One of the primary focuses of the meeting was the ongoing planning of a multi-national, double-blind clinical trial using deferiprone, a chelating agent aimed at removing excess iron from the body. Committee Chair […]
Our primary focus for 2023 remains increasing enrollment worldwide by identifying SS patients through clinical care referrals, social media outreach, and Superficial Siderosis Research Alliance patient community advocacy. Evaluation of patterns in real-world clinical practice and self-reported patient experiences contribute to advancing the understanding of superficial siderosis, management practices, quality-of-life, and improving long-term health outcomes.
Earlier this year, the Castleman Disease Collaborative Network reached out to the SSRA with a request to participate in a project meant to develop a well thought out plan rare disease organizations could implement to resolve the roadblocks patient organizations face in trying to gain approval for repurposing of drugs currently on the market for therapeutic use in unrelated conditions. […]
The Importance of Biobanks in Rare Disorders The design of the Superficial Siderosis Patient Registry intentionally includes the capability to reach every corner of the world. With our upgraded capacity to record patient submitted information, the time has come to increase our global enrollment outreach program. To begin the next step in our research evolution. Biomarkers are an essential part […]
Recently I’ve been working on a new funding application for a much larger superficial siderosis research project. While this exercise requires listing and rewriting the exact details I share repeatedly, I realized the most crucial question is, why does superficial siderosis research matter? What separates our rare condition from the 7,000 other rare diseases and disorders to make us special […]
Antioxidant Supplementation For Enhancement Of Neural Protection From Free-iron Toxicity In Superficial Siderosis Our inaugural SSRA sponsored research project is designed to explore the possibility that boosting brain urate by treatment with an antioxidant will slow the brain cell degeneration of superficial siderosis patients. This project might substantially shorten the time needed to develop a complete neuroprotection treatment plan. Optimizing […]
Measuring The Iron When a Two-year observational study on the efficacy of deferiprone1 was released, one finding stood out. Physicians had submitted the participants’ MRIs during several stages of the research; differences in MRI equipment, sequencing settings, and magnification produced data that was difficult, if not sometimes impossible, to compare. MRI sequencing is required to track existing hemosiderin levels characterized […]
WHAT IF RESEARCHERS COULD IDENTIFY A WAY TO GIVE YOUR BODY A FIGHTING CHANCE? Research takes a very long time, so as hard as it may be to face, even though some of our SS community friends will never experience the benefits, you still have an opportunity to contribute. To make a difference to those who follow with a real […]
