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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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 […]
The Superficial Siderosis Research Alliance celebrates its 2nd anniversary on September 24, 2021 Since its inception in 2019, the SSRA has been honored to represent the superficial siderosis rare disorder community. Battling a rare disorder is difficult, but patients and caregivers are no longer alone in this fight with the Superficial Siderosis Research Alliance (SSRA). This past year the SSRA […]
Sharing Our Rare Disorder Journey As part of our awareness campaign this September, our SS community members from around the world joined together to create a footprint in the world of digital awareness. This short video is available for viewing on several social media platforms and offers a unique window into the superficial siderosis patient rare disorder journey. When you […]
Round Up For Research To spread awareness during September Superficial Siderosis month, Caffe’ Crema owners Tanya and Greg Beers have added a “ROUND-UP FOR RESEARCH” option to their online ordering app and in-store sales. Customers will be given an option of rounding up their purchase to the nearest whole dollar for donation to the SSRA. They also can bump their […]
Superficial Siderosis Awareness Month is Here September has arrived, and the SSRA regional directors are working overtime on our Superficial Siderosis Awareness month campaign. As a result, the education articles are hitting inboxes, our social media feeds are humming, and our advocates are stepping up to spread the word about Superficial Siderosis. One look at the efforts of our Rocky […]
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 […]
Removing Regulatory Roadblocks There are over 7,000 identified rare diseases and disorders in the world. While Superficial Siderosis may impact a small number of people, the Everylife Foundation believes a cumulative 30 million Americans are living with all these conditions. 93% to 95% have no FDA-approved treatments. While there are many reasons, research and regulatory challenges remain high on the […]
