PILLAR POINT As with many cases of neurofibromatosis, you wouldnt know that Kim W. Fletchers son, Ganon, has the genetic disorder of the nervous system.
Mrs. Fletcher said her son was diagnosed at 4 months old and lives a normal, healthy life now as an 18-year-old. With the exception of a learning disability, there have been limited interruptions in his life from the disorder, she said.
Treatment isnt treatment; its just monitoring, Mrs. Fletcher said. There is still no cure.
People with neurofibromatosis get tumors on nerves in their body. According to the National Institutes of Health, the disorder could lead to skin changes, deformed bones, hearing loss, ringing in the ears, poor balance or intense pain.
The disorder is monitored at speciality clinics, including one in Syracuse and one in Buffalo. Many families also go out of state for management of the disorder. Mrs. Fletcher said she knows first hand that traveling to and from hospitals and clinics, getting tests done, medication and other related expenses can add up quickly. She wanted to help other families in situations similar to hers and in 1999 began fundraising for the Childrens Tumor Foundation to support research in finding a cure for neurofibromatosis.
In 2008, she and a few other north country residents formed NF R.A.C.E.R.S. Inc., a nonprofit agency to help families in the state cover expenses related to the disorder. There will be a 10k run at 8 a.m. Saturday and a 2k fun run/walk/bike at 9:30 a.m. Saturday, with both events starting and finishing at Kittos Marina, 23169 Kitto Marina Drive.
The cost to participate in the Race the Lake for Research is $35 for the 10k run and $10 for the 2k event. Those fees include a post-race pancake breakfast.
Our goal for every event is to really reach more families affected by neurofibromatosis, Mrs. Fletcher said. Our local organization has three board members with children with NF, so right here in Watertown thats three people with it off the top.
The event will receive some extra attention with the attendance of Reggie Bibbs, a man from Texas who has the genetic disorder. He runs the organization Just Ask, which is based on the concept of people just asking him why he has disfiguring tumors.
For more information on the race, call Kittos Marina at 639-6043.