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 [...]
Read MoreBy 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 [...]
Read MoreDoes 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 [...]
Read MoreAnnouncing 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 [...]
Read MoreSeptember 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 [...]
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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 […]
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 […]
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 […]
Our Connection Is Our Strength September is almost upon us again, and with it comes the annual Superficial Siderosis Awareness Month. This year, we are embracing a theme that resonates deeply with every community member: “Power of Community: Our Connection is our Strength” #teamsuperficialsiderosis. The journey with Superficial Siderosis (SS) is one that no one should walk alone. It’s a […]
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 […]
Part One of a Three-Part Series This is a must-read if you are interested in advocacy, specifically working with the SSRA. Rori Daniel (our Executive Director) and I met several years ago at a 2019 rare disease advocacy event in Washington, D.C. Rori was with a friend, her daughter, and Gary, her husband, who has superficial siderosis. I traveled to […]
