Triathlete racing for GAN disease awareness

HOUSTON (KTRK) -- Jared Clark is a 16-year-old triathlete from Bellaire High school, with a very charitable heart. He thinks he has raced in close to 80 triathlons.

About three years ago, after his first half Ironman, he began to ride with a purpose. His twin brother Justin, and little sister Lexi, suffer from a rare genetic disease called Giant Axonal Neuropathy (GAN).

"We found out my twin brother and little sister had GAN and I wasn't really doing anything. I wanted to do something for them," said Jared Clark. "So I figured since I am doing the half Ironman, why not race for them, do it for them."

His mother, Lagenia Clark, has become a triathlete after watching Jared's passion grow. She told us that even though Jared and Justin are twins, they are very different, but that both have a giving heart.

Jared Clark felt the urge to not sit around and make something happen for his siblings.

"When I found out that my twin brother had GAN, I really didn't want to sit on the sidelines. I wanted to help him, so finding out that it was a deadly disease, really struck me," said Jared Clark. "I'm a carrier of the disease so it could affect my life too, and I really wanted to be proactive in finding a cure for GAN."

"Through our work with "Reason to Race," we have raised over $333,000 through races, so we have had about 90 different athletes who have raced for us," Lagenia Clark added.

Jared Clark's most recent initiative is through a Facebook campaign hosted by the Bill and Melinda Gates Foundation.

"Jared wrote an essay and the top 20 most liked stories are going to go before a panel of judges," said Lagenia Clark. "So you can like the page through December 31."

Jared Clark says when the races get tough, he is constantly thinking of his siblings.

To help his efforts, please visit the Facebook campaign.