Last summer, I connected with Laura from Write The Happy Ending after learning that she was training to run the Thunder Road Half Marathon blindfolded to honor her sister Taylor, and to bring attention to Batten Disease, the fatal rare disease that afflicts her sister.

I was so touched by Taylor’s story that in August, on Taylor’s 15th birthday, I went on a run for Taylor to help her celebrate, and then wrote about what I saw and heard along the way.  Later in the fall, Taylor’s sister Laura wrote a guest post for Deb Runs after she ran the Thunder Road Half Marathon in Charlotte, North Carolina; and yes, she ran the entire race blindfolded as planned.

Now Laura is hoping to spread the word about Batten disease and other rare diseases by getting her story on the cover of Runner’s World Magazine. This was brought to my attention last week when I received the following tweet:

TaylorsTaleTwitterRequest
 

I clicked on the link, and voted and it only took me a few seconds.  Now I’m asking you to help Laura Edwards spread the word by voting for her.

 

“Our story has a chance to be on the cover of Runner’s World magazine.
This kind of exposure would be amazing for our fight to save millions
suffering from rare diseases.”
– Laura Edwards

 

To give you a little more background information, here is Laura’s entry to Runner’s World…

 

HOW DID YOU START RUNNING?

I’ve been running for most of my life and played competitive soccer through college, but I didn’t start entering races regularly until watching my little sister, Taylor, battling a fatal brain disease that causes blindness, run her first 5K at age 10 in 2008. Running gave Taylor a chance to be a “normal” kid, and I love it for that. At the finish line that day, I made a silent promise to run for Taylor as long as possible, both to honor her incredible courage and to raise awareness of Batten disease, the illness that will take her life.

 

WHAT IS THE PERSONAL RUNNING ACCOMPLISHMENT YOU ARE MOST PROUD OF?

In November 2013, I returned to the event where Taylor ran her first 5K. To honor the fifth anniversary of her brave 3.1-mile run, I wore a blindfold bearing the phrase “4Taylor,” which I’ve inked on my arm for all of my races. With a guide, I ran the half marathon blindfolded in under two hours. I ran portions of the race “untethered,” and my team and I raised money and gained national exposure for Taylor’s Tale, the non-profit organization I co-founded in Taylor’s honor. My next challenge is to run a race in all 50 states for Taylor.

 

WHY IS RUNNING IMPORTANT TO YOU?

Aside from the fitness benefit, running is a great way to relieve stress, and I do some of my best thinking on the run. Most of all, it helps me feel close to my little sister, who can no longer run because of her disease. During my blindfolded half marathon, I ran untethered several times, and I never felt closer to Taylor than during those stretches. I imagined her next to me, healthy, her legs in sync with mine, her voice dancing on the wind, her eyes drinking in the earth.

20140712-160257-57777121.jpg
 

Please vote EVERY DAY between now and August 15.  Laura and Taylor are in the top 10 right now, but they won’t win without your support.

Feel free to tweet, share on Facebook, or any other way you wish.  Also, please use #RWCoverContest and #RareDisease when sharing.  Thanks so much!

 

  • Questions:
  • Are you a Runner’s World reader? ~ I have been forever!
  • Will you please vote to help Laura get her story on the cover of Runner’s World?
  • Do you know anyone fighting a rare disease (rare diseases affect one in 10 Americans!)?