When Kate was diagnosed with Friedreich’s Ataxia (FA) in early 2016, we were stunned. As parents, some of our worst fears were being realized. We were overcome with feelings of hopelessness and isolation.
In October of 2016, Rachel and I made what would prove to be one of the best decisions of our lives. We decided to attend a two-day event in Philadelphia that was hosted in part by the Friedreich’s Ataxia Research Alliance (FARA). The event included a scientific symposium, a movie screening, and a bike ride. It provided an opportunity for us to learn about what was being done in research for our daughter’s rare disease and to connect with other families that shared our same fears.
Over the last four years we have devoted ourselves to supporting FARA and their mission to find treatments and a cure for FA. We have also worked to become advocates for the rare disease and disabled communities and to promote the shared support of the FA family. Kate has spoken to many legislators, scientists, civic organizations, and educational institutions. She has produced hours of social media content to create awareness for the FA, rare disease, and disabled communities.
Increasing public awareness of Friedreich’s Ataxia; enjoying friendship and common goals and experiences with other families similarly affected; promoting research toward the treatment and cure of FA; and funding that research have become our passions. Make it Happen CureFA was created to provide these initiatives lasting support.