When my fraternal twin brother (age 16) and little sister (age 11) were both diagnosed with a fatal genetic disease a little over three years ago, I knew I had to try and do something to help them. That is when my clock started. I didn’t just give one time to try and help them. My giving is continual since the race to find a cure is still in progress.
My family founded the group Justin’s TRIumph in 2012, which works in partnership with the nonprofit Hannah’s Hope Fund, raising money to find a cure for Giant Axonal Neuropathy (GAN). GAN is a rare, fatal genetic disorder. Children with GAN are typically in wheelchairs by age 12. They later become quadriplegics and require the use of feeding tubes and ventilators. Life expectancy for kids with GAN is only into their 20s.
I started doing kids triathlons when I was 7 and then started doing adult triathlons. Once they were diagnosed, I decided that I would dedicate all of my tris to not only my brother and sister, but all of the kids with GAN. I swim, bike and run for them since most of them can’t walk by themselves. I became one of the youngest people in the world to complete a half-IRONMAN triathlon (70.3miles) in 2013 when I finished Oilman 70.3 at age 12. I swam 1.2 miles, biked 56 miles and then ran a half marathon (13.1 miles). It took me over 8 hours to complete the race but every time I got tired, I just thought about my brother Justin and sister Lexi and the other kids in the world with GAN (there are 73 diagnosed children currently, but then we only knew of around 50). Because it is so rare, all fundraising has been at a grassroots level.
I have since completed two more 70.3 races in addition to over 80 multisport adult races including some XTERRA (off-road) triathlons. Each race is dedicated to GAN. I have a sticker on my bike that says “I ride for GAN,” and on my trikit it says, “I Tri for GAN." I encourage others to also raise money for a cure for GAN through the Reason2Race partnership with Hannah’s Hope Fund. In the three years that I have been racing for GAN, more than 90 athletes have participated in races on our Justin’s TRIumph Reason2Race teams and raised over $337,000. These race fundraising efforts combined with money raised through GAN Galas, concerts and other local Houston events, total over a million dollars. These funds have helped launch a clinical trial that is currently underway at the National Institute of Health to find a cure for GAN. I hope my brother and sister get to be a part of this trial themselves in 2017.
I recently received my Eagle Scout award. In keeping with my love for multisport racing, my Eagle Scout project was a Justin’s TRIumph Splash and Dash to encourage children to have a healthy active lifestyle. Over 130 children, ages 7-14, finished the swim/run and my project raised over $10,000 for GAN.
While my race timing chip time stops each time I cross the finish line in a race, my time for GAN is continually running and I won’t stop that clock until a cure for GAN is found.
Jared will be running in The Woodlands Charity Challenge in March. Make a donation to Hannah’s Hope Fund to support the treatment and cure of GAN. If you want to join others “TRIng for GAN,” email Lagenia Clark at email@example.com to get involved.
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