Northern New York Newspapers
NNY Business
NNY Living
Sun., Oct. 4
Serving the community of Ogdensburg, New York
Related Stories

Saturday race to benefit local neurofibromatosis foundation


PILLAR POINT — As with many cases of neurofibromatosis, you wouldn’t know that Kim W. Fletcher’s 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 isn’t treatment; it’s 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 Children’s 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 Kitto’s 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 that’s 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 Kitto’s Marina at 639-6043.

Commenting rules:
  1. Stick to the topic of the article/letter/editorial.
  2. When responding to issues raised by other commenters, do not engage in personal attacks or name-calling.
  3. Comments that include profanity/obscenities or are libelous in nature will be removed without warning.
Violators' commenting privileges may be revoked indefinitely. By commenting you agree to our full Terms of Use.
Syracuse Football Tickets Giveaway
Connect with Us
OGD on FacebookOGD on Twitter