Local News

November 15, 2013

Smile Project helps those with genetic disorder

It wasn’t until 10 years after Aaron Coulter had been diagnosed with a rare disease that he finally met another person he could completely relate to.

“It was like meeting a friend who completely understood you in ways you wished you didn’t,” Coulter said. “You knew you could be there for each other because you understood each other, but you wished so desperately you didn’t have to.”

The 2006 graduate of Dalton High School was diagnosed with neurofibromatosis 2 (NF2) at age 14. Approximately one in 40,000 people have it. Within the last year he has been able to connect with others with NF2.

NF2 is a genetic disorder that causes non-cancerous tumors. Though the tumors are often benign, they can form in an area that presses against a nerve, causing pain or paralysis. And they can form in areas that cause brain damage, leading to surgeries and treatment to shrink them. Coulter has undergone numerous surgeries including brain surgery, spinal surgery and facial surgery. He is currently in chemotherapy to shrink some of his tumors.

Coulter has turned the disease into a way to help others.

The second annual Help Stop NF2-Smile Project’s silent auction will be Saturday beginning at 6 p.m. at the Creative Arts Guild. Smile Project has been adopted by the nonprofit agency Help Stop NF2. The mission is to “help provide well-needed support so that those affected may regain their stolen facial expressions, most especially, their smile,” Coulter has said about his organization.

The auction will feature art and photography from approximately a dozen photographers in the Southeast, Coulter said.

“Each have donated about five images apiece, and we are printing them on canvas,” he said. “We also, from different groups, have beautiful handmade quilts sent in.”

There is no cost to attend, and refreshments will be provided by Panda Express.

Proceeds from last year’s auction, approximately $1,500, helped pay for costs outside of hospital bills for a young woman who underwent facial surgery because of the disease. The costs helped pay for her stay in Boston, where the surgery took place, travel and time off work.

“This is not the only option, but it really works,” Coulter said. “When I found out it really works, people asked how much it costs. I found many people who would love to do it but simply couldn’t afford to go there or stay there. They could afford the hospital costs, but not the other stuff.”

Coulter hopes to raise closer to $2,500 this year.

“I didn’t have a goal last year,” he said. “We treat each case we get in individually. When a person comes in, we’re not going to say you get $700. We figure out what their needs are.”

For more information, contact Coulter at Nf2fight@gmail.com or visit The Smile Project at Helpstopnf2.org.

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