Video-game drive helps raise awareness, support for little-known disease

By Katherine Brown

Correspondent

Published: Wednesday, July 9, 2014 at 5:37 p.m.

A local nonprofit organization is aiming to raise awareness for a little-known disease while giving back to the community.

Give6, an initiative by Joshua Joel SMA Life Inc., is a video-game drive for children that runs through Dec. 1. 

Ian and Patrice Fletcher started the organization in 2012 to create awareness and education about spinal muscular atrophy, a disease that last year claimed the life of their son, Joshua Joel Fletcher, who would have turned 6 in June. The Give6 initiative is named in his honor. 

“I wanted to start doing something in honor of him, for the foundation, so that we bring more awareness to the disease,” said Patrice Fletcher, who is president and CEO of the foundation. 

Spinal muscular atrophy is a rare genetic disease that affects voluntary muscles throughout the body, meaning normal body functions are compromised.

The organization is officially launching the drive at 4:30 p.m. Thursday at the Children's Home Society Family Treasures Thrift Shop, 710 N. Main St. A ribbon-cutting ceremony begins at 5:30 p.m. 

The drive was partially inspired by the Fletchers' daughter, Julia, 13, who had old video games she no longer used but were still in working condition. They said if their daughter had unwanted games, other people probably did as well, and children who may not have the chance to own them probably wanted them. 

But the organization's key goal is to raise awareness about spinal muscular atrophy so families can become advocates for their loved ones, said Ian Fletcher, vice president of Workforce Development for the Gainesville Area Chamber of Commerce.

“We had to become advocates quickly for our own son's life,” he said.

He said his family was frequently given conflicting information about their son's health and medical practices for people with his condition. 

Little is known about spinal muscular atrophy, and medical professionals who know what it is or how to treat it are even more rare, Fletcher said.

It is the No. 1 genetic killer of infants and toddlers younger than 24 months, but there is a promise of a cure with adequate research. Having good quality of life for people with the disease can be hard, and Patrice said this was a driving factor in wanting to start a video-game drive. 

“Just like our son was limited medically, there are kids [who] are limited financially,” she said. “So when you say quality of life, our heart is not just for medical. Our heart is for quality of life for all.” 

New games and consoles will be collected, as well. Items being collected include video games, game consoles and accessories. No broken games, consoles or accessories, or any games rated mature/adult or with excessive violence will be accepted.

Drop-off locations are the Children's Home Society Family Treasures Thrift Shop; O2B Kids Supercenter, 6680 W. Newberry Road; and the Gainesville Area Chamber of Commerce, 300 E. University Ave., Suite 100. Used video games will be accepted through Nov. 22, and new games will be accepted through Dec. 1. 

Tax-deductible monetary donations also are accepted by Joshua Joel SMA Life Inc. for research purposes. Long-term, the organization hopes to raise enough money to fund a research project and to start an annual conference to raise awareness about the disease and show support for those affected by it, Ian Fletcher said.