Meet Nova, a vibrant 7-year-old girl who is one of the only children in the world participating in a study for her ultra-rare form of Congenital Muscular Dystrophy (CMD). Diagnosed at age 2, Nova has a specific, newly-discovered gene mutation (INPP5K) that researchers are just beginning to understand. As her father, Bill Brown, a public school teacher of five, I am fighting not just for Nova's health, but for the future of every child with this rare disease.

Nova is currently the only person of her subtype enrolled in the critical natural history study at the University of Iowa Wellstone Muscular Dystrophy Specialized Research Center. This study is essential for tracking her disease and providing a benchmark for future treatments. Unfortunately, due to limited resources and potential funding cuts to the National Institute of Health (NIH), the vital research being done is at risk, which would disproportionately affect ultra-rare diseases like Nova’s.

To ensure Nova remains in this life-saving study and to amplify our advocacy efforts, we urgently need your help. We need to raise funds to fly Nova, her mom, and me from Rochester to Iowa to attend the Wellstone Patient and Family conference from July 12th–14th. Last year, we missed this crucial opportunity because travel was prohibitively expensive. By getting us there, you are directly supporting critical research, empowering our advocacy, and helping a determined little girl—who loves zooming around in her new wheelchair—live her best life. Every dollar brings us closer to a treatment. Thank you for being a part of Nova's journey!