August 6, 1999

Children who have a genetic disorder called Neurofibromatosis have symptoms ranging from minor spots on the arm to disfiguring tumors all over the body.

Today, a large group of them from around the world came back to the Eccles Institute OF Human Genetics in Salt Lake - the place which discovered the gene almost ten years ago.

Science Specialist Ed Yeates tells us why.

All these kids have Neurofibromatosis. The genetic disorder causes abnormal tumor growth which can disfigure, stoop the back or even kill.

They're all here on this day to learn the basics - the mechanism of how the gene for their disorder was discovered . They and their families will also hear the latest - what years of research has accomplished and how far away or how near scientists are to finding some answers on how to treat the disorder.

The symptoms of NF are hardly visible on some - more visible on others.

For now, 12-year-old Matthew Moriarty has only minor brown spots on his arm. But his mother worries about the future.

LAURIE RODERICK, MATTHEW'S MOTHER: "THERE'S A VERY GOOD POSSIBILITY AS HE REACHES CLOSER TO PUBERTY - 80 PERCENT CHANCE FROM THE LAST I HEARD - THAT HE COULD END UP WITH THE NEUROBIROMAS ON HIS SKIN."

ED YEATES, SCIENCE SPECIALIST: "THESE KIDS BEGAN EXTRACTING DNA FROM PEAS IN THE LOBBY OF THE ECCLES BUILDING. THEN THEY MOVED IN HERE TO THE REAL LAB TO WORK WITH HUMAN DNA."

These are the same labs - the same benches where the gene for NF was discovered ten years ago. It's also a place where kids who all have the same thing can feel comfortable with each other.

MATTHEW MORIARTY: "EVERYBODY REALLY GETS ALONG PRETTY GOOD AND THEY REALLY DON'T MAKE FUN OF EACH OTHER BECAUSE THEY ALL HAVE IT."

This concept of bringing people with genetic disorders into the lab with teachers for a hands-on experience is NEW. These kids are just the first of many who'll do the same thing under a new partnership between scientist and the patient.