Source: NorthFulton.com

Helping a 9-year-old fight neurofibromatosis
Businesses raise money against disorder

by Jonathan Copsey

June 02, 2014

ALPHARETTA, Ga. – Nine-year-old Jack Burke has been through a lot in his short life.

The Milton resident suffers from a rare disorder called neurofibromatosis (or N.F. for short). This disorder is a genetic one that affects the body, leading to a high chance of getting tumors, especially in the brain. The disease can be either hereditary or through a genetic mutation. In Jack’s case, it was mutation. There are several identifying symptoms, but the most common one is brown spots on the body, similar to freckles.

“It’s a disorder with no cure or effective treatment,” said father Jake Burke. “It’s very common. One in 3,000 kids is born with it.”

That makes it one of the most common disorders in children.

Jack was 2 years old when he was diagnosed.

Since the diagnosis, the Burkes have educated themselves about the disorder and have tried to raise awareness about it in the general public in the hopes of finding a cure. They do this through fundraisers throughout the Atlanta metro area, such as golf tournaments.

Jake said the first year they tried fundraising, they raised $15,000. The second year, they raised $400,000. This year is the third, and the family hopes to again beat their goal.

One of those fundraising efforts was held May 20 at the Twisted Taco location on Windward Parkway. With the help of local companies GoWaiter and Red Hare Brewery, the event drew people to raise money for N.F. in an effort to “kill the keg for N.F.”

“Jake is a good guy with a good family,” said Jason Daniel, of Twisted Taco. He met the Burkes at one of the golf tournaments and was immediately hit with the desire to help.

“We wanted to do more,” Daniel said.

And they did. Along with a personalized keg of beer from Marietta-based Red Hare Brewery, Twisted Taco and GoWaiter brought Chopper, the mascot of the Gwinnett Braves.

For more information on the Burke family and neurofibromatosis, visit www.curenfwithjack.com.