Prompting conversations about scleroderma that help to raise awareness about the disease and increase funds for research has been a life-long commitment for Will Whitehurst. “I believe so strongly in the power of scleroderma research, that I have worn a Scleroderma Research Foundation wristband since I was in middle school to help prompt conversations about the disease, my dad’s diagnosis, and our family’s experience,” says Will Whitehurst.
Will’s father, Bill, was diagnosed with Scleroderma at age 23. Bill lived a very full life for 37 more years, including marrying, raising three stepchildren, and having a son of his own. When asked by anyone about scleroderma, Will says he tries to describe it in a way that is “understandable, relatable, and truthful. I want people to understand why my dad looked different and couldn’t do certain activities but still lived a wonderful, normal life.”
He also wants people to understand the importance of research. “Research is critical for three key reasons,” Will says. “First, a cure cannot be identified without rigorous, well-supported research. Second, treatments from research help improve quality and length of life, as my dad experienced thanks to cutting-edge therapies. And third, because Scleroderma is not a well-known disease, every dollar dedicated to research is a precious resource in helping patients and their families.”
Will says, “My dad was the most positive, compassionate, and persistent person I’ve ever known, and I hope his life can serve as an inspiration for all of us about how to live life and love those around us.”