By Jenny Imhoff
Today marks the beginning of a long weekend for many Americans. It’s a time to soak up the last days of summer sun and gather with friends and family. For many Americans, Labor Day weekend also has been synonymous with MDA, thanks to its long-running telethon.
My family was very lucky to have been featured three times on past MDA telethons. My 10-year-old daughter Reagan, who lives with spinal muscular atrophy, loved representing kids with SMA and other muscle-debilitating diseases. My husband Joe and I loved speaking on behalf of all the parents of courageous kids like Reagan.
The telethon shined a spotlight on diseases like ours, but the challenges of severe, life-altering illness continue for us even after the camera lights dimmed. Our fight and the challenges we face are bigger than one weekend or one fundraising event. We’re determined to not let these diseases attack precious everyday freedoms such as walking, running, speaking — even hugging the ones we love. For us, fighting muscular dystrophy, ALS and related muscle diseases is a year-round, round-the-clock effort.
We know firsthand. Reagan faces challenges every single day. For her, that means undergoing surgeries and obtaining and maintaining equipment to help her remain mobile and keep her airways clear so she can breathe freely. They include dealing with life-threatening respiratory emergencies that erupt during the night. And they even include a different kind of challenge – one that comes from learning that someone we know and care about has lost his or her life to a disease similar to Reagan’s.
But life, our life, is not solely focused on the struggle; it’s about the strength. It’s about celebrating everyday joys and possibilities. Reagan carries a bright light of kindness and hope inside of her, which helps her inspire everyone she meets. She embraces every precious moment, whether she’s hanging with friends and enjoying “girl time”; pursuing her love of dance and learning new routines to be performed from her wheelchair; or meeting and talking with people about the important work being done by MDA. I know that same spirit lives in so many of the other MDA families and supporters.
To honor its history and commitment to telling powerful stories of courage and strength, MDA is spotlighting families like ours this weekend who are dealing with muscle disease every day. It’s a reminder that our work isn’t isolated to one holiday, and that we are closer than ever to treatments and cures.
I can’t tell you how exciting it is to know that progress is being made to find therapies that will have potentially lifesaving results. We’re very grateful to supporters of telethons past, including the passion of its greatest champion, Jerry Lewis, for bringing us to this point and for helping to get new treatments into market. This reality gives us strength, encouraging us to view the future as something filled with hope and promise.
Please watch these inspiring video stories. Share and repost them. And keep MDA’s mission in your heart this weekend – and all year long.
Jenny Imhoff lives in New Berlin, Wisconsin with her husband Joe and beautiful 10-year-old daughter Reagan. Reagan was diagnosed with SMA type II as an infant. Reagan serves as MDA’s 2015 National Goodwill Ambassador. The entire family never misses an opportunity to speak about the support they receive from MDA an enlist others in our mission to save and improve lives.
