Superb Health

Kyle's Race 5k, who, what, where, when, why?

First 'Kyle's Race' to be held in Vergennes race to benefit disease research

By Mary M Lane

The Burlington Free Press

With the snow gone (mostly), charity run season is gearing up. This season there's a new race in the area inspired by a boy who's been in a wheelchair for most of his life. Photo by: Emily McManamy, free press

(Kyle Grant, 13, of Addison works on a science project at Vergennes Union High School on Thursday April 29, 2010.Nick Lynch, a personal trainer and nutrition guide, is organizing a 5K run in May for Grant who who has the muscular disorder Myotubular Myopathy (MTM). All proceeds from the event go to the Joshua Frase foundation, which promotes MTM research at Children's Hospital Boston, Harvard Medical School and Wake Forest University.)

The first "Kyle's Race" 5k will be held May 23 in Vergennes to raise money for research into myotubular myopathy (MTM), a muscle disorder that produces severe skeletal muscle weakness and hinders the ability to breathe and swallow. More than 50 percent of patients diagnosed with MTM die within the first two years of life, due to respiratory complications.

Although in a wheelchair, Kyle Grant, 13, for whom the race is named, will participate in the event with his nurse, Natalie Valente, 22, of Middlebury.

All proceeds from the race will go to the Joshua Frase foundation, which promotes MTM research at Children's Hospital Boston, Harvard Medical School and Wake Forest University.

Though Kyle is a bright and engaged student in his classes at Vergennes Union Middle School, the physical limitations of MTM are extensive. Valente is by Kyle's side daily from 8 a.m. to 2 p.m. to admin-

ister respiratory treatments, physical therapy exercises and manage his ventilator settings. Due to potential complications with his respirator, Kyle must have a nurse or other trained caregiver with him at all times.

"This is the first year he's really been noticing he's a little different than other kids," Valente said. "He's starting to see he can't just go over to a friend's house unless he has someone with him at all times. He wants you to get away, but he needs you to be there in case he needs something."

Research has already contributed to improving MTM treatments and increasing independence for patients like Kyle. In 2008, Wake Forest made considerable headway researching MTM in a Labrador retriever.

"If those physical limitations were to be lifted, he could be much more independent," said Valente, noting that even erasing writing on a piece of paper can be exhausting for Kyle. "He's limited by his body, not by his mind."

Nick Lynch, 25, of Middlebury is Valente's fiancee and is organizing Kyle's Race. Lynch, a personal trainer and nutrition guide, sees the event as a healthy community activity, as well as a fundraiser.

"People will be running and walking together as a community for a good cause," he said "Everybody's getting out and doing something positive."

Lynch anticipates more than 200 participants at the race, noting particular interest from local sports teams and health groups. He has also secured sponsorship from local businesses including Black Diamond Sportswear in Montpelier and Stone-Leaf Teahouse in Middlebury.

Alison Frase, 45, co-founder of the Frase Foundation, lauds the effort that Kyle's race is making and emphasizes the importance of research in reaffirming society's value in children with disabilities.

"As we come together as a team, it brings recognition that these children are very valuable. Our goal is to give them a quality of life that is far beyond what the medical community has expected of them," Frase said.