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 […]
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 […]
2021 Silent Auction Let’s be honest. Our annual silent auction would never be the successful event it is without the support of our friends. Every year when our call for auction items goes out, it’s met with love, support, and generosity. With donations now beginning to arrive, our 2021 auction is shaping up to be bigger and better than ever. […]
Antioxidant Supplementation For Enhancement Of Neural Protection From Free-iron Toxicity In Superficial Siderosis Our inaugural SSRA sponsored research project is designed to explore the possibility that boosting brain urate by treatment with an antioxidant will slow the brain cell degeneration of superficial siderosis patients. This project might substantially shorten the time needed to develop a complete neuroprotection treatment plan. Optimizing […]
It’s A Virtual World It’s lobby day for your SSRA advocates! Rori Daniel will be representing the Superficial Siderosis Research Alliance and our SS community during this two-day virtual event. On Wednesday, March 3rd, the SSRA will meet with Senator Ted Cruz and Senator John Cornyn’s offices. On Thursday, March 4th Rori will meet with Representative Pat Fallon and Representative […]
Measuring The Iron When a Two-year observational study on the efficacy of deferiprone1 was released, one finding stood out. Physicians had submitted the participants’ MRIs during several stages of the research; differences in MRI equipment, sequencing settings, and magnification produced data that was difficult, if not sometimes impossible, to compare. MRI sequencing is required to track existing hemosiderin levels characterized […]
Sharing The SSRA Mission
