Kids don't usually spend their first day at summer camp examining DNA samples under a microscope and posing clinical questions to a renowned researcher.

But 38 kids attending a two-week summer camp in Utah seemed thrilled with their Sunday afternoon in a lab at the University of Utah's Eccles Institute of Human Genetics.That's because they were participating in the second annual National Neurofibromatosis Foundation Summer Camp at Camp Kostopulos in Emigration Canyon, in a program designed to help children with NF1 understand and cope with their disorder - and have some fun.

"I feel more comfortable talking about it (at camp)," said Amy Trima, a 13-year-old from Attleboro, Mass. "A lot of my friends can't even pronounce (neurofibromatosis), and they don't like to talk about it. Here they know what I'm going through because they're going through it too," she added.

Once misidentified as "Elephant Man's disease," NF1 is a genetic disorder that causes tumors to grow along nerves throughout the body and can lead to disfigurement and skeletal abnormalities.

On Sunday, 38 summer campers from all over the United States, Germany and Switzerland had an opportunity to learn more about their disorder from one of the scientists who helped dispel the "Elephant Man" label and correctly identify NF1's genetic source.

Two of the campers are twin 16-year-old sisters from Berlin who have NF1. They are attending the camp as part of their first time in America.

"It is interesting to see the many different kinds (of NF1), to see how they develop in some people," said Nancy Trautzsche, one of the twins, noting that some people have tumors in their chest, and some in their eyes.

"I think it's very important to learn from other people with the same illness," added her sister Nadine."

"It's interesting to learn about NF1, to learn how it comes about in us," agreed Christine Manolis, a 14-year-old from Long Island, N.Y. Manolis, who was diagnosed with NF1 when she was 12, said she was scared when she learned about the disorder.

Meeting people at camp and seeing others living with the disease has helped, she said.

"Now I feel more comfortable, and I can wear shorts, when I didn't wear them before. Camp made me happy," she added.

Dr. David Viskochil was part of a six-member research team under the direction of Dr. Raymond L. White that made medical history in 1990 when they found and cloned the gene that causes NF1.

The discovery was an important breakthrough, Viskochil said, because it helped doctors understand how NF1 works. It turned out the NF gene was shutting down a complex protein interaction affecting cell growth.

The disorder is more prevalent than cystic fibrosis and Huntington's disease combined, effecting an estimated 100,000 Americans and more than 1 million people worldwide. But it's less widely known.

Viskochil said one reason for its comparative obscurity is that two-thirds of the people affected by neurofibromatosis exhibit some minor cosmetic symptoms - such as cafe-au-lait spots - but otherwise lead normal lives with few medical complications.

However, one-third suffer from tumors that can involve larger nerves and press on vital organs. Also, they may experience severe curvature of the spine and may be prone to a certain type of malignant tumor.

Neurofibromatosis is especially difficult for young people, Viskochil said, because it often strikes at the "pimple phase" of their lives. While other teens are dealing with minor skin eruptions, those with neurofibromatosis may be suffering skin tumors.

"Self-esteem is an issue with these kids," Viskochil said. "It's more difficult for them to develop self-reliant ways to cope."

That's where the summer camp comes in, Viskochil said.

"It's clear to me from the type of questions they ask that these kids are grasping what it means to have NF1. They want to know about the different treatments and ways to approach it. They are motivated; they are taking charge of their disorder."