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09/09/2012 04:47 PM

Walk Held For Neurofibromatosis

By: YNN Staff

A local family held a walk on Sunday to help battle their son's debilitating Neurofibromatosis.

The Rochester community joined the Sorman family to raise money for the disorder.

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Connie Sorman organized this NF Walk after her son Jessie was diagnosed with the progressive disorder at the age of 6 months. NF causes tumors to grow on nerves throughout the body, and affects millions of people worldwide.

"It's a long word. It's a big word and a lot of people haven't heard about it. It's highly under-recognized, which is why we do these things," said Connie Sorman, President of the Western NY Chapter of the Children's Tumor Foundation. "Awareness is a huge thing for NF because there are so many people out there with it: one in 3,000. It's more prevalent than Cystic Fibrosis, Muscular Dystrophy and Tay Sachs combined and you've heard of all these things."

All proceeds from this NF walk will support the Children's Tumor Foundation's medical research, as well as patient support and public education programs.