On Saturday, June 26, 2021, after struggling to breathe for nearly 30 hours, my Mom “took her big trip” at… Read More "A Celebration of Life and Memory"
Newsletter
Speeding Therapy Access Today
Removing Reguatory Roadblocks There are over 7,000 identified rare diseases and disorders in the world. While Superficial Siderosis may impact… Read More "Speeding Therapy Access Today"
Bigger and Better
2021 Silent Auction Let’s be honest. Our annual silent auction would never be the successful event it is without the… Read More "Bigger and Better"
Superficial Siderosis Neuroprotection Study
Antioxidant Supplementation For Enhancement Of Neural Protection From Free-iron Toxicity In Superficial Siderosis Our inaugural SSRA sponsored research project is… Read More "Superficial Siderosis Neuroprotection Study"
2021 Congressional Lobby Event
It’s A Virtual World It’s lobby day for your SSRA advocates! Rori Daniel will be representing the Superficial Siderosis Research… Read More "2021 Congressional Lobby Event"
2021 SSRA Presentation
Our Coder Search Begins
Measuring The Iron When a Two-year observational study on the efficacy of deferiprone1 was released, one finding stood out. Physicians… Read More "Our Coder Search Begins"
Banding Our World Together
Sharing The SSRA Mission Read More "Banding Our World Together"
Champions
This past year has certainly been an experience as we learned to navigate the waters of virtual events. Everyone is… Read More "Champions"
Thankful
JX Enterprises is celebrating its 50th anniversary of leadership in the transportation industry. Since 1970, JX has grown to over… Read More "Thankful"