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 Research Alliance (SSRA). I call out Rori Daniel and Sue Dempsey with the partnership of several volunteers as true champions. We have begun to see how bringing people together for a like cause will make research possible.
Now the work begins. Yes, we had a successful launch, but to really thrive we need to build something sustainable. Because we represent a rare disease that is rare inside of rare, we need a 100% commitment from the superficial siderosis community to make this successful. I say, “join our alliance”. Join our volunteers and help us raise funds for research. Why raise funds for research? Well, it all begins there. No one will get better without new research now, in 2020, for superficial siderosis.
We have several ways to get involved; become a Founders Club member or choose your level of support from our Champions Program. Whether you’re a super supporter, a business supporter, or a Monthly Captain, virtually every dollar donated will go directly to a research program for superficial siderosis. We call everyone in this group a champion because champions win; never give up when things look bleak or times are tough. SSRA Board Member Randy Kohler, who named our Champion Program, will be writing a guest blog explaining the special meaning behind our new donation program.
People with SS have a difficult challenge, no doubt. They can’t say I have superficial siderosis to someone and expect them to understand. It’s frustrating having to explain yourself over and over again. Still, we do it because it is necessary. We need to work together, through the SSRA in the U.S.and The Silent Bleed in the UK. In joining the power of our fundraising we have more direction in finding the best research programs available.
2020 is well underway; this will be a breakout year for the SSRA. As I said earlier, “Join our Alliance.” We already have new events planned. Please, stay in touch via the website and join us if possible, even if it requires travel. For us to be successful, because we are so spread out, we must do what is necessary. The SSRA is not going away. We will make a difference in the lives of those with superficial siderosis. We need families involved as well. Everyone counts, if we have 100% participation, we could achieve our five-year goal this year.
“Join our Alliance“