Monday, September 19, 2016

Running Towards a Cure: Meet Members of Team Douglas

"Imagine a disease that combines the worst symptoms of muscular dystrophy, cerebral palsy, cystic fibrosis, immune deficiencies, and cancer- especially leukemia and lymphoma, all rolled into one fatal genetic diseaseChildren with A-T are usually confined to wheelchairs by age ten and do not survive their teens." - Run AT: For Kids Who Can't, pamphlet from A-T Children's Project. 

Until a few months ago, I'd never heard of A-T, or Ataxia-Telangiectasia. Matthew first brought it to my attention when he approached me about running for the A-T Children's Project as a charity runner. He recently had a student in his class, Emma, who shared his affection for runDisney events and told Matthew about her experience running the 2016 Walt Disney World Half Marathon for the A-T Children's Project on Team Douglas. Douglas, or DJ as he's also known, is Emma's brother and he was diagnosed with A-T at the age of five. He's now 22 and defying the odds as an A-T "kid."

After learning more about A-T and the work that the A-T Children's Project does- and hearing about Emma's awesome experience- Matthew signed up to run the 2017 Dopey Challenge with Team Douglas. Recently, I sat down with Emma to talk to her about what motivates her to run for DJ and the A-T Children's Project. 

Emma (standing second from left) with DJ and some of the A-T Cure Team at last year's WDW Half Marathon.

Emma grew up athletic, though running was "not her sport." Her mom actually got her into running because she'd been running the WDW Marathon for 10 years- all for the A-T Children's Project. So last year, Emma decided to run her first half marathon at Walt Disney World as a part of Team Douglas. 

Leading up to the race, Emma's longest training run was nine miles. "Looking back," she says, "I wish I'd had more of a training plan." During the race itself, she said the heat was really getting to her and caused her to slow down a bit towards the end. She had a goal for her first half marathon- under two hours. 

"I was actually really mad at myself because I was looking at the time clocks on each mile marker, thinking that was the actual time I'd been running so I let myself slow down thinking 'oh, I won't reach my goal time' but actually, I finished in 2:04! If I had just not looked at the clocks and slowed down, I could have made my goal of sub-2."

Emma's goal for 2017? "Still sub-2."

Besides running and training, Emma and I talked for a long time about A-T, the impact DJ's diagnosis has had on her and her family's life, and how the disease manifests itself on DJ. A-T is a multi-system disease that involves immune system problems, a predisposition to cancer, progressive degeneration of the cerebellum, has no cure, and currently, there is no way to slow down the disease. 

DJ was diagnosed at five and was wheelchair-bound by 10. At age 14, he was diagnosed with a rare and acute type of blood cancer (one of the Leukemias) that resulted in over 100 days in the hospital the first year alone and an additional four years of chemotherapy. To this day, he still requires IVIG and platelet transfusions every six weeks and will continue to need them for the rest of his life.


But none of that slows DJ down. According to Emma, "He's a fighter. He never lets anything get him down and always has a big smile on his face, even if he's hurting." 

In addition to being an awesome brother, DJ also works part-time at a local running store, AppalachianRunning Company (ARC). I reached out to Josh Beck, owner of ARC, and asked him what DJ brings to the workplace: "So what does he bring?  A huge smile.  That’s the part I think about with Doug.  It’s easily the strongest muscle in his body!  He also brings a perspective to the store that is uniquely his.  It’s not often you see someone in a wheelchair selling running shoes.  His condition does not define him but it is a reminder that we all have it very, very good." 

I asked Emma about what motivates her to keep running for Team Douglas: "If he can go through all he's gone through and still fight, I can be in pain for two hours and run a half marathon. What I deal with is nothing compared to his daily life." 

After meeting with Emma it is clear how much her family has been impacted by A-T. While A-T itself is extremely rare, one in every 40,000- 100,000 live births, research into the disease can actually significantly advance research in other more prevalent diseases: Alzheimer's, Parkinson's, AIDS, and cancer. The A-T Children's Project is a "non-profit organization that raises funds to support and coordinate first-rate biomedical research projects, scientific conferences, and a clinical center- all aimed at finding a cure or life-improving therapies for ataxia-telangiectasia (A-T)."  

The Walt Disney World Marathon is one of the largest fundraisers for the A-T Children's Project. Runners from all over the country will descend upon Walt Disney World in early January of 2017 as part of the A-T Children's Project team with two common goals- successfully cross the finish line of their race and find a cure for A-T. 

As part of Team Douglas, Matthew will join the A-T runners as he runs all four races that weekend in the 2017 Dopey Challenge. I asked Matthew about his motivation to run as a charity runner: "I've had the good fortune to run at seven out of the last eight Walt Disney World Marathon Weekend events and I just wanted to give back as a charity runner. I want to run for those who can't- including Emma's brother and all the other A-T kids that the A-T Children's Project is working for."

Matthew's Goofy Challenge finish in 2013.

While I'm not officially part of Team Douglas, I wholeheartedly support all the work that the charity runners and the A-T Children's Project do to help fund-raise to find a cure for this disease. I can't wait to cheer on all the runners in a few months at Disney as they celebrate crossing their finish line and being one step closer to a cure. 

For more information about A-T and the A-T Children's Project, check out their website here

For more information on Team Douglas, click here 

Donate to Emma here or Matthew here

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