When I had surgery to correct my scoliosis, I knew it would be a big step toward helping me sit upright. But what I didn’t realize at first was that my procedure could also contribute to FA research in a meaningful way.
FA is a rare disease, which means researchers don’t have as much access to affected tissue as they do for more common conditions. But every sample helps. By donating the tissue removed during my surgery, I was able to support scientists studying FA, giving them real-world data to work with as they search for better treatments—and ultimately, a cure. At first, the idea of donating tissue kind of creeped me out, but then I learned that it wouldn’t change anything about my surgery—they would only collect and donate excess tissues that would otherwise have been discarded. Once I understood that, it seemed like an easy way to help.
The process was simple. A few weeks before my surgery, we contacted CHOP (see the contact info in this flyer). They coordinated with my surgeon and got everything arranged in advance. On the day of the surgery, the surgeon handled everything. The process was simple, and the best part? It didn’t change anything about my recovery, but it did give me the chance to make an impact.
If you or a loved one with FA are having surgery – including tendon transfer or heart procedures – consider looking into tissue donation. It’s a small step that could make a big difference for our community. You can learn more here.