Posted by: Sara | August 20, 2013

Running for Ataxia-Telangiectasia at the Disneyland Dumbo Dare Challenge

Crossing the finish line of the Walt Disney World Mickey Mouse Marathon and the final leg of the Goofy Challenge, January 2013. Photo Credit: MarathonFoto

Crossing the finish line of the Walt Disney World Mickey Mouse Marathon and the final leg of the Goofy Challenge, January 2013. Photo Credit: MarathonFoto

One of the best feelings in the world is when an event you have been anticipating for months is just around the corner. Two nights ago, I literally couldn’t sleep because I am so excited about the Disneyland Dumbo Dare Challenge. Over the past several months, remembering how happy I was when I finished the Disney World Goofy Challenge has helped me get through a few dark moments and get me back to the joy that is running and the power of overcoming what you thought you couldn’t. I’m completely aware that I am blessed with the opportunity to repeat that experience in California and I’ve been looking forward to it for a very long time.

One of the ways I have been trying to appreciate this opportunity is by raising money for a very special cause. Back in January, when my Goofy running buddy Telisa and I were considering registering for the Dumbo Dare Challenge so we could complete our Coast to Coast medal requirements, we were nervous about the cost because running Disney World was expensive given the cost of the race, hotel, airfare, and food. We didn’t even do the parks because of the expense (which was fine since we both wanted to be off our feet before and after the events). Turning around and repeating the heavy costs, especially as I was facing uncertainty with a job, definitely took some thought; however, because of the popularity of the race and the inaugural Dumbo Dare Challenge, not knowing for sure that we wanted to run cost us: the race sold out literally in front of our eyes. That’s when I knew I wanted to run it, but we were too late. I remember that moment– I was really sad. I refused to give up, though, and immediately began to research charity race entries. That’s when I learned about the A-T Children’s Project (ATCP).

A-T stands for ataxia-telangiectasia (pronounced “uh-tax-ee-uh tell-ann-jeck-tay-shuh”). According to the ATCP website, A-T is “a rare genetic disease that attacks children, causing progressive loss of muscle control, immune system problems, and a high rate of cancer.” Think about taking the symptoms of muscular dystrophy, cerebral palsy, cystic fibrosis, AIDS, and cancer and you have one hell of a degenerative disease. There is also no cognitive damage, so you’re basically aware the whole time of what is happening to you if you are living with A-T. The U.S. government currently doesn’t fund research for A-T therapy, even though Johns Hopkins and St. Jude both have A-T caregiver consultative clinics. Some experts believe that, due to the multi-system impact of A-T, research for A-T will help research in other diseases such as Parkinson’s Alzheimer’s, AIDS, and cancer. Children who are born with A-T usually don’t survive past their teenage years. It’s a hard life sentence for the child and for the parents who are literally powerless to stop the disease’s slow progression.

For the past eight months, however, I have been raising money for a young girl named Emily Hughes. Emily is awesome. She’s 18, will soon be attending college, has ridden horses since she was 10, and is incredibly active in her church’s numerous mission trips. She even has a small business in the paper shredding industry that she runs out of her home. This girl is a rock star who has not let a terrible disease define who she is, and I am so honored to be raising the funds needed to ensure her quality of life. I am also incredibly excited for the opportunity to meet her and her family next week at the ATCP’s pasta dinner party. In all honesty, it is my favorite part about this whole thing. I honestly cannot wait to meet her. She doesn’t know how much I have looked up to her. In fact, I’ve barely thought about the race because I know I can’t let her down.

Raising money for Emily through the ATCP has been an incredibly humbling experience. What first started out as a venture to enter a race has turned into a burgeoning realization that the world is bigger than me, that there are real problems with no real solution, that people live with issues that go largely unrecognized, but that also you never know who is going to come along and take interest in helping, even if the motivation for doing so isn’t purely altruistic. I love raising money for charities, I love being able to give back, but given my past experience with raising money while training, I will be honest– all I wanted to do was get into the race, and the ATCP offered an attainable way for me to be able to participate. But it has become so much more than just a race entry. I’m not even thinking about how happy I will be when I cross the finish line and collect all four– yes FOUR– medals. I will probably still be glowing from such a meaningful experience as having raised money for a PERSON and getting to meet this person myself and see the impact of not just my efforts but the efforts of everyone who helped me reach my fundraising goal.

Wearing one of the braided crocheted infinity scarves that I made to raise money for ATCP.

Wearing one of the braided crocheted infinity scarves that I made to raise money for ATCP.

I decided that the best way to raise the money was to crochet scarves and sell them for $20 donations each and I easily reached my now seemingly too small goal of $600. People I hadn’t spoken to in ages came out on Facebook in support of the cause and sometimes purchased more than one scarf from me because the donations went towards Emily’s care. I even met a new friend when I posted a picture of the scarf on Instagram and she ordered one– I will be meeting her next week at the race where I will give her the scarf she ordered, and I was even sending well wishes to her as she was going through the massive May tornadoes that ripped through Oklahoma near where she lived. I never would have that connection if I didn’t go through the ATCP to raise money.

To say that I sat there crocheting and thinking of how awful it is to live with A-T and how brave Emily is for living with it would be untrue. Sometimes, I was worried that I wouldn’t get the scarves done on time and I would let people down. I think what I love most about this experience is what I have learned without thinking about it at all. And I think I will see the realization of its impact when I am at the pasta party, shaking hands with her family and giving Emily the pink scarf that I am crocheting for her. I can’t wait to blog about it– stay tuned.

I want to take a moment and say THANK YOU to everyone who supported my fundraising efforts over the past several months. Many people bought scarves but some also donated out of the kindness of their hearts. Through this experience, I have learned that people will always come through in ways you don’t expect them to and that it will always take your breath away when they do. Believe me when I say that I have loved every moment of this endeavor and I am inspired to do more as a result. Thank you, from the bottom of my heart.

To read more about Emily Hughes, check out this June 2013 Houston Chronicle article:

P.S. These scarves were so popular that I may continue to make more to raise money for various other organizations that offer charity entries to sold-out races. Stay tuned– I will likely take up these efforts as part of the Advocates for the Survivors of Torture and Trauma team running in the Baltimore Marathon in October 2013. If you would like to order a scarf, please email me at with your name in the subject line and the words “Charity Scarf” (example: Sara Brown Charity Scarf). Suggested donation of $20 plus cost of shipping. All proceeds go towards the cause.

Here’s a link to the album with examples of scarves:

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