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 [...]
Read MoreWe'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 [...]
Read MoreEmpowering 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 [...]
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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 […]
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 […]
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 […]
