Superficial Siderosis Newsletter-Blog

Superficial Siderosis Symposium

Our First-Ever Superficial Siderosis Symposium 2025 We are thrilled to announce the Superficial Siderosis Symposium 2025, an extraordinary event hosted by the Superficial Siderosis Research Alliance (SSRA). This inaugural conference will occur at the prestigious Harvard University’s Loeb House from June 11 to June 13, 2025. Please consider joining us for this informative event in Cambridge, Massachusetts. A Historic Venue: Loeb […]

September Spotlight on Superficial Siderosis

Today marks the beginning of our Spotlight on Superficial Siderosis Week, a special time to raise awareness, share valuable resources, and shine a light on this rare neurodegenerative disorder. We at the Superficial Siderosis Research Alliance (SSRA) are thrilled to kick off this week by announcing an exciting development many of you have eagerly awaited! We are proud to share […]

The 3rd Annual Trail Grinder Run!

We’re excited to announce the 3rd Annual Trail Grinder Run, Sponsored by Caffe Crema and benefiting the Superficial Siderosis Research! The event will happen on Saturday, September 28th, at the Atlanta MTB Trail in Atlanta, Texas. It will offer a choice of 5K, 10K, and 30K runs—something for everyone, from beginners to seasoned trail runners. Caffe’ Crema is a local East Texas […]

Rare Disease Day 2024

Empowering Voices: Advocacy and Awareness on Rare Disease Day Rare Disease Day is a powerful platform for advocacy and awareness, empowering the voices of those living with conditions like Superficial Siderosis. By sharing stories, fostering community connections, and advocating for policy changes, the rare disease community can effect meaningful progress in the fight against SS and other rare conditions. The […]

A Rare Disease Advocate’s Triumphant Dash Through a Medical Maze

By Jeffery Newholm A conversation with Wes Hale, rare disease warrior As February, Rare Disease Month, nears its conclusion, the crusade against Superficial Siderosis is taking another turn towards the checkered flag. Below, Wes describes his fight with an out-of-tune medical system that was not prepared to diagnose, let alone treat, the progressive disorder accurately. However, Wes refused to let […]

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 […]

A Comprehensive Resource for Providers Treating Superficial Siderosis

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 […]

Power of Community: Celebrating Superficial Siderosis Awareness Month with Dr. Michael Levy

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 […]