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 […]
We did it! If you had asked me eight years ago if I would have thought of starting a non-profit, I would not have believed you. Our 14-year-old daughter Mackenzie, was diagnosed with superficial siderosis (SS) in 2012. Born with a congenital heart defect, we had once been more concerned with her heart problems. Now, we are the Superficial Siderosis […]
Deciding to Start a Charity is a Tough Decision I remember when we heard our daughter had Superficial Siderosis several years ago, we did not know what to do or think. She had no symptoms, she had been in a car accident about four years prior and we had scheduled an MRI because another doctor noticed her tongue had some […]
