Superficial Siderosis and the Ferroptosis Frontier

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 […]

4 Superficial Siderosis Research Committee Summer Meeting Highlights

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 […]

Quiet Before the Storm

Summer Update 2022 Unbelievably we’re about to begin the second half of 2022 already. If you had a chance to look through our 2021 Annual Report, you might be familiar with the SSRA plans for this year. So it seems the perfect time to let everyone know about our progress with a summer update on what’s happening behind the scenes. […]

What’s Happening in 2022

Our Progress The Superficial Siderosis Research Alliance was organized during the summer of 2019 and began operations in early October. Our initial fundraising effort began in earnest in November, and we ended 2019 much further than we imagined. We began expanding our educational, organization, and patient registry websites in 2020 to provide a permanent 24/7 resource to our community. In […]

Biobanks Are Transforming Research

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 […]

Why Superficial Siderosis Research Matters

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 […]

Superficial Siderosis Neuroprotection Study

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 […]

Brain Tissue Donation Project

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 […]

Natural History Study

Natural History Study Of Superficial Siderosis Knowledge of natural history is essential for developing more efficient clinical trial designs. It also could help reduce the length and cost of drug development and, possibly, contribute toward greater predictability of clinical development programs. -Janet Woodcock, M.D., Director of FDA’s Center for Drug Evaluation and Research (CDER)