Buzz Pics - Racing and Hoping

Submitted by Lagenia Clark

When and where was this photo taken?
It was taken Nov. 3 at the Oilman Texas Half-Ironman Triathlon finish line.

Who is pictured?
Justin, Jared and Lexi Clark. Jared is a seventh grader at Pin Oak Middle School, Justin is a seventh grader at Crossroads School, and Lexi is a third grader at Horn Academy.

What is happening here?
At 12 years old, Jared was the youngest competitor of the 700 participants. An experienced triathlete, he’s competed in 50 races of varying distances and sizes. However, this race was different. At 70.3 miles, not only was it the longest race Jared had ever attempted, but it also held significant meaning. He was racing to raise awareness and funds to help fight GAN – an extremely rare, fatal, genetic disease that has affected his twin brother Justin and younger sister Lexi. In August, Justin was diagnosed with Giant Axonal Neuropathy (GAN). After further genetic testing, it was determined that Lexi also has the disease. Roughly only 50 children worldwide have GAN, and research is sparse. Fortunately, there is hope. A nonprofit organization called Hannah’s Hope Fund (HHF) is helping fight GAN. Scientists hired by the fund have found a potential cure, and HHF hopes to get approvals from the FDA to start human clinical trials at the National Institute of Health in 2014. These trials are the only lifeline that Justin, Lexi and other GAN kids have.

Why is this photo special to you?
I am Justin, Lexi and Jared’s mom. When Jared learned his siblings had GAN, he decided to dedicate his upcoming half-ironman race to them and ask supporters to pledge a dollar amount per mile that he was racing. With approval from his doctors, Jared trained for his race with swimming, spin class, cross-country running and biking. He completed the Oilman Triathlon with a time of 8:18:05.

Jared achieved his goal. Not only did he finish the race, but he raised awareness for GAN. Television crews, newspapers and social media followed the story. HHF received donations from around the world, and pieces ran throughout the United States and Europe. However, this is not the finish line for our family. If you would like to help, please go to Justinstriumph.org or hannahshopefund.org and consider making a tax-deductible donation to help cure this disease.

Every picture tells a story. Buzz Pics highlights a resident’s special photo and tells the story behind it. To submit your own Buzz Pics, send a high-resolution photo and answers to the Q&A questions. Total word length, including the questions, should be 300-350 words. Send to [email protected], or call 713-668-4157, ext. 22. With a print photo, bring it by or mail to The Buzz Magazines, 5001 Bissonnet, Suite 100, Bellaire, TX 77401. Please include your email, phone and home address. Stories may be edited for clarity or space.