Patient & Family champion
When Boice’s childhood friend gave birth to a son, Derek, it was immediately evident that something wasn’t right: He had extra digits, had low muscle tone, and the bones on his right side were bowed. The doctors could not provide a credible diagnosis, which meant no treatment protocol. The 49-year-old former marketing executive began researching. “I learned that 1 in 10 Americans—30 million people—and 350 million people worldwide are affected by rare diseases. There are more than 7,000 identified rare diseases, but fewer than 20 percent have organizations providing support or advocacy. Fewer than 5 percent have accepted therapies or treatments. I thought, ‘This is an opportunity to champion something for others.’ ” In 2008, with the U.S. sinking into recession, Boice launched Global Genes, a nonprofit organization to support families affected by rare diseases.
Why group these 7,000 distinct diseases in one category?
As you start hearing the stories of different families, you begin to see that there are a lot of similarities to their journeys, regardless of the disease. The majority of these illnesses are genetic. The families wish they could get more information. They’ve all felt isolated by their disease.
Has it been difficult to achieve momentum?
When I left my job, one of my advisers told me I was crazy. But he also said, “I guess if you’re still around when we come out of this recession, then you’ll know that what you’re doing is needed.” We’ve seen double-digit growth almost every year. But we need to grow our footprint locally.
And you did all of this for Derek?
Yes, and for my friend (Kelly Seymour). Every day I wonder if I’ve helped her that much. There’s so much more that we need to be doing before I can say that I’m truly helping my friend in her day-to-day life.