Motivated to Find a Cure

“There’s nothing a parent won’t do when they have a child with an incurable disease,” says Nancy Fine, whose son, David, was diagnosed with Crohn’s disease six years ago, at age 16.

Crohn’s disease, along with ulcerative colitis, falls under the umbrella term inflammatory bowel disease (IBD).  IBD causes inflammation of the gastrointestinal tract, which leads to a variety of painful, life-impairing symptoms.  Each year the incidence of the disease increases, and today it is one of the most significant chronic diseases affecting children.  There is no cure known for IBD.

After David’s diagnosis, Nancy and her husband, Jeffrey, tried to comfort their son.

“He was devastated,” Mrs. Fine recalls.  “We told him then and there that someday there would be a cure, and that Jeff and I would do everything to make that possible.”

It’s a promise they have kept.

The Fines co-chair the IBD Family Research Council with Christine Karnes and Richard Check, whose daughter is an IBD Center Patient.

Formed in January 2006, the IBD Family Research Council aims to raise $5 million for Children’s Hospital research that could lead to a cure for pediatric IBD.  “We are persistent,” says Nancy.  “We need to do this for our kids.”

The Family Research Council has been creative and energetic in working to meet their goal.  They’ve raised money through soft pretzel sales, making and facilitating private donations, and securing corporate sponsorship for a concert held in April 2007 at the World Café Live.  This concert, the Key to Hope, was a terrific success, raising more than $100,000.  The Council hopes to turn it into an annual event.

“Every cent that we make goes directly to research,” Mr. Fine says.  Their effort is well invested, supporting the research at the Center for Pediatric Inflammatory Bowel Disease at The Children's Hospital of Philadelphia.  The IBD Center is the largest facility in the United States dedicated to the treatment and study of IBD in a pediatric population, more than twice the size of the next leading center.  By a vast margin, the IBD Center receives more referrals and publishes more material than any other comparable program in the world.

Today, David Fine is a senior at Northwestern University in Evanston, Ill.  The Fines feel a debt of gratitude to the staff of the IBD Center, particularly David’s doctor, Robert Baldassano, M.D.

“We were just so lucky that the cutting-edge, number one pediatric IBD research and treatment center happened to be in our backyard,” says Mrs. Fine.  “Jeff and I really believe that one day the cure will come, and when it does, it will come from Children's Hospital.  That’s our motivation.”