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 […]
Announcing the New “Medical Professional” Section, a Resource for Providers We are thrilled to announce the launch of a dedicated “Medical Professional” section on our SSRA website (Superficial Siderosis Research Alliance). This new section aims to serve as a comprehensive resource for providers treating superficial siderosis (SS), a rare neurological disorder. Healthcare providers often navigate uncharted waters when treating patients […]
September is Superficial Siderosis Awareness Month In keeping with this year’s Superficial Siderosis Awareness Month theme, “Power of Community: Our connection is our strength,” join us as we dive deep into the world of superficial siderosis through an enlightening conversation with Michael Levy, MD, Ph.D. As many in our community know, while Dr. Levy is the Chief Medical and Research […]
The Superficial Siderosis Research Alliance takes great pleasure in announcing a gift of $31,000 from the Harry and Helen Cohen Charitable Foundation, Rochester, New York. This generous donation expresses the foundations’ support for our advocacy, education, and medical research mission. Dr. Frederick R. Cohen (z”l), a professor of mathematics at the University of Rochester, passed on January 16, 2022, at […]
Recently our Australian SSRA director Fiona stumbled upon an Instagram photo shared by another rare disease organization. It was a quote from a piece I had written over four years ago for the U.K based charity, The Silent Bleed. This was before Gary and I met Kyle, and an organization like the SSRA was an out-of-reach dream. When I went […]
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 […]
Let’s Get Ready to Rumble I have to say I’m a little jealous. There are some people out there who are running away with some rock bottom deals. It’s hard to believe the auction is almost over, but the smart buyers always stake their claim early. So with only two bidding days left, I thought this would be an excellent […]
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 […]
Rare Disease Legislative Advocacy In A Virtual World Every year representatives from rare disease organizations from across the country travel to Washington DC. We advocate for legislative issues of importance to the rare disease community by sharing with our legislators and Congressional staff how healthcare policies impact our rare journeys. This annual event also provides a unique opportunity to meet […]
On Saturday, June 26, 2021, after struggling to breathe for nearly 30 hours, my Mom “took her big trip” at 11:45 am. That’s what she’d say when someone died or when she contemplated her own death. As fate would have it, my brother and I were the only family members in the room. Corey was on her right side, holding […]
