Keeping Hope Alive

For the past six years, Colin Connors has been a member of Team Hope, a bicycling team that competes annually in the Denver Children's Hospital Courage Classic. This weekend race, which is held in July, is a fundraiser. It covers 175 miles of beautiful scenery, including three mountain passes, in Colorado from Leadville to Copper Mountain. Connors also gives freely of his time, volunteering with various organizations that help kids with chronic illnesses.

Connors, age 17, has neurofibromatosis (NF), a genetic disorder that causes tumors to grow around nerves anywhere in his body at any time. Most NF tumors are not cancerous, but some of Connors' tumors have become malignant.

Connors was first diagnosed with the disease when he was 18 months old. He had a stroke at age three and has a brain tumor. The Denver teen tells C&EN that he has had "so many surgeries" that he has lost count. Most recently, he had surgery for a rare form of spina bifida. Now he can't go to school, where he was a junior aiming to graduate in 2007. The side effects of the surgery have left him incontinent and without bowel control.

He is hopeful for some progress and is currently involved in a clinical trial. The trial, which is being conducted at the National Institutes of Health in Bethesda, Md., is using thalidomide, a once-dreaded drug that is now being developed for various difficult-to-treat diseases (C&EN, June 20, 2005, page 122). Researchers hope that thalidomide will shrink his many tumors and stop the growth of new ones.

What seems to worry him most, however, is the extreme cost of health insurance: His family is struggling to pay more than $1,200 per month for private insurance. Both Connors' mother and his sister also suffer from NF, but not so severely as Connors. Two other siblings are free of the condition.

Connors' mom, Yvonne Grinnell, sounds tired when she gets to the phone. "It's also been hard for me to get a job," she says. Her NF is primarily dermal, manifesting itself as numerous benign but disfiguring tumors on her skin. "We live in a very vain society," she says. She and her son tell some harrowing stories of discrimination that they have suffered because of their NF.

"My hope for the future is if researchers cannot cure NF, they can at least control it," Grinnell says. NF is unpredictable. She explains that there are times that the tumors become active and grow. "Puberty is one trigger. Another is pregnancy. Another is if you have neurofibromas on inconvenient spots and they get irritated. When you have one removed, it seems that it sends out signals and makes the little tumors mad that you've removed one," she says. The condition can get out of control quickly, becoming extremely painful or even life-threatening.

Connors has been on thalidomide for about a year. Grinnell says she is waiting until early September to have MRIs for both of her children who have NF. "Then, I'll probably have two kids in clinical trials," she says. Her 15-year-old daughter, Erin, has plexiform NF tumors, which are those that contain interlacing blood vessels or nerves, in her abdomen. Grinnell herself doesn't qualify for the trial.

Grinnell's message to the pharma industry is, "Keep up the research, don't give up. Don't ever give up, because through research there are answers and through research you find cures." Connors takes the phone back and echoes the sentiment, "Don't ever give up," he urges.