If you’re like most people, you’ve never heard of neurofibromatosis (NF). Neither had JoAnne Pastel and Bill Dunlap, of Wayzata, until their 5-month-old daughter, Jacqueline, was diagnosed with the tumor-causing disorder, for which there is no known cure.
Although NF is more common than type 1 diabetes, patients can find treatment at only four U.S. clinics. Thankfully for Jacqueline and her family, two national NF leaders—pediatric hematologist-oncologist Chris Moertel, M.D., and cancer geneticist David Largaespada, Ph.D.—work at the University of Minnesota. Together they lead the Minnesota Neurofibromatosis Clinic Without Walls and are working on three government-sponsored research projects studying NF-related cancer and scoliosis.
“Neurofibromatoses are associated with brain and nervous system tumors, learning disability, deafness, cataracts, blindness, and bone-growth disorders,” says Moertel. NF research, he says, could help the 100,000 Americans affected by NF, as well as an additional 65 million who have cancer and 35 million with learning disabilities.
Following Jacqueline’s diagnosis, Moertel helped to calm her parents’ fears at an annual University-sponsored NF symposium. “After talking with Dr. Moertel, I felt like a ton of bricks had been lifted off our shoulders,” says JoAnne.
Today Jacqueline’s parents bring the now 2-year-old—“an outgoing social butterfly”—to be seen by Moertel and his team of specialists, who monitor her tumors.
The family also has visited Largaespada’s lab to see his research firsthand. “I feel like they’re going to come up with something to slow down the tumors,” JoAnne says.
Meanwhile, she is doing what she can, too. She is working to build awareness of the disorder, even adding “Nina,” a character with NF, to her line of children’s books called Bur Bur and Friends®.
“We want to help them as much as we can,” she says of the team at University of Minnesota Amplatz Children’s Hospital. “They know us. They know their patients. They truly care.”