Nine days before the race of my life, I received a short email message from a writer asking me if I could do a short interview for a possible feature on my attempt to run Charlotte’s Thunder Road Half Marathon blindfolded in support of my sister, Taylor, and the fight against rare diseases. Between final training runs and race preparations that weekend, I did an interview with Gail Kislevitz of the New York Road Runners.

No emotions could match those I felt the day of the race on Saturday, Nov. 16, as I ran 13.1 miles in the dark, led only by my guide, Andrew Swistak, and the courage of my sister, whose presence I felt throughout the morning even though her declining health didn’t allow her to attend. But when I received another email from Kislevitz early on the morning of Tuesday, Nov. 19, informing me that our story had been selected for publication, I jumped so high in the air that my head almost hit the ceiling of my closet.

Taylor’s story is moving, and Taylor’s Tale has been lucky to achieve a great deal of local and statewide media coverage since our founding in 2007. The Thunder Road story, in particular, raised our profile and helped us reach a whole new audience, garnering multiple TV, print and online stories and even the cover story in a statewide magazine. But the news that Runner’s World, the world’s largest running magazine, had chosen our story for its What it Takes column made my heart race.

The March issue hit newsstands on Friday. I subscribe to Runner’s World, but I raced to the grocery store to purchase a few additional copies. We didn’t get the cover, a full-page story or even a full column, but seeing our names and a phrase I hate with every bone in my body – “Batten disease” – within its pages means everything to me. We may have only gotten a paragraph, but thanks to that paragraph, thousands of people who would have otherwise never heard of Batten disease now know the name of the monster stealing my sister away from us. Maybe, just maybe, they’ll Google it, learn the depths of its horrors and be compelled to help kids like Taylor – a kid who, once upon a time, loved to run – just like them.

And that’s the only reason I’m running this race.

Note: Our story appears in the “What it Takes” column on page 20 of the March issue of Runner’s World magazine. Thanks to the Runner’s World team for their support of our fight against rare diseases!