Days filled with constant finger sticks, injections, tears and worry: It is a life that only the parents of children with type 1 diabetes can understand. The younger the child at the time of diagnosis, the more difficult it is to monitor the disease, formerly known as juvenile diabetes, and administer the required treatment.
Jacqueline Fusco, whose son was diagnosed at the age of 18 months, and Susan Root, whose daughter was diagnosed at age three, have each lived that life, which explains why they have little enthusiasm for a treatment breakthrough. The Connecticut residents hope for nothing less than a cure for the disease, and they are doing something about it.
Their grassroots organization, Bike the Miles, has raised close to $1 million, all of which has been directed to the Cure Diabetes Now Fund, which supports the promising research being conducted by Denise Faustman, MD, PhD. Like Ms. Fusco and Ms. Root, the gifted Massachusetts General Hospital investigator is focused on a cure. In the process, Dr. Faustman has consistently questioned the status quo in the field of type 1 diabetes research.
Bike the Miles came about when Ms. Fusco, a nurse, and Ms. Root, a former physical therapist, met at a summer camp for kids with diabetes. “I had read an article about Denise Faustman’s 2001 research, in which she had successfully regenerated islet cells,” Ms. Root recalls, referring to the body’s insulin-producing cells. “I said to Jackie, ‘she’s on to something.’” The established dogma was that islet cells cannot regenerate. Dr. Faustman had accomplished “the impossible” in mice.
“It was huge for us,” says Ms. Fusco. “We needed to know more about her work and where it was headed.” It took persistence, but the two women managed to get a meeting with Dr. Faustman in 2003. During the three-hour forum, she described her hypothesis, drew pictures and got them excited about the clinical trial she was planning — a trial with the goal of curing type 1 diabetes. “We were in awe. Everything she told us made sense,” according to Ms. Fusco.
“We wanted to do something to raise awareness and, possibly, funds for Dr. Faustman’s research,” says Ms. Root. “So we came up with the idea of having our two families bike the 211 miles from Connecticut to her lab in Boston.” Local television stations and newspapers covered the story, and the Fusco and Root families raised $150,000. “We were floored,” Ms. Root adds.
Since then, the annual Bike the Miles event has taken off, attracting other riders and raising more money each year. At this point, Ms. Fusco and Ms. Root have become well-versed in type 1 diabetes research. They stay in touch with Dr. Faustman and have remained committed to her work, as she takes the steps to test a very new idea in diabetes research.
Their hope that a cure for type 1 diabetes may be imminent intensified when Ms. Fusco’s nine-year-old daughter was diagnosed with the disease last year. “Seeing our kids every day – that’s what keeps us going,” says Ms. Root.