Here at runladylike.com, Fridays are about sharing the inspiring stories of fit people who motivate all of us to be better tomorrow than we were yesterday. My Friday FITspiration series profiles runners, triathletes and casual exercisers who are making choices every day to be as healthy as they can be – in both huge ways and through simple, small victories. 

It has been two years since you last stopped by to chat with us about your sister and your inspiring story. At the time, you were training to run a half marathon blindfolded in honor of your sister. Tell us what you’ve been up to since then.
When I crossed the finish line blindfolded in November 2013, a lot of people asked when I’d do it again. I hadn’t thought about it until that moment, but I immediately realized I could never recapture the magic of that race. I had to do something different to keep my sister Taylor’s story alive. So on National Running Day the following June, I shared my plan to run a race in all 50 states to support millions like my sister and honor her courage as a runner. I know running a race in all 50 states isn’t nearly as rare as running a half marathon blindfolded, but it’s already helping me achieve my goal of spreading her story across the country.

Since August 2014, I’ve raced in eight states. I’ve gotten media coverage in all but one state, and I’ve been overwhelmed by the support of local communities and race teams. I suffered a stress fracture during the Charlottesville Half Marathon in April and had to take a five-month break from running, so I’m happy to be this far along in my journey. In fact, a month after the injury, I walked the Fargo 5K in a walking boot instead of running the half marathon. It’s funny how life works sometimes. I was the top story in the local paper and shared the front page with American record holder Deena Kastor who was in town for the event. That race was also special to me because the 5K was Taylor’s distance. Last fall, I returned to Charlotte’s Thunder Road Half Marathon, where I first ran blindfolded. I ran with a blindfold for the final 1.25 miles without being tethered to a guide (a friend ran with me and verbally guided me to the finish). We both set a new PR of 1:44!

In addition to running around the country, I’ve been busy advocating for millions of Americans fighting a rare disease (Taylor’s Tale was the catalyst for a historic bill signed into law in North Carolina this August), supporting gene therapy at UNC, and even writing a memoir about my sister’s story and our efforts. While it’s not a book about running, running is an important part of the story. I finished the book this summer and am seeking publication.

How is your sister Taylor doing? How is her health today?
Taylor’s health has declined rapidly since I ran the blindfolded half marathon. On New Year’s Eve 2013, it took a sharp turn for the worse, and she’s had several extended hospital stays and surgeries since then. She can no longer talk and is in a wheelchair. She is tube-fed and suffers seizures. Batten disease is ugly and cruel, and it has taken its toll on my sister. But despite the fact that she has lost almost everything, my sister still manages a small smile or laugh every so often. I hope she understands how much her courage has inspired me and so many others. It’s building a powerful legacy for future “Taylors” because of the work her life has inspired.

You’ve decided to run a race in all 50 states to honor Taylor. What races have you completed thus far?
I’ve run Oregon’s 13-mile Crater Lake Rim Run, Tennessee’s Great Smoky Mountains Half Marathon, South Carolina’s Great Pumpkin 5K, Texas’ Woodlands Half Marathon, Virginia’s Charlottesville Half Marathon, North Dakota’s Fargo 5K and Hawaii’s Kauai Half Marathon. Of these, my favorites have been the Crater Lake Rim Run (for its scenic beauty and because it was the first) and the Kauai Half Marathon (for its location and the incredible support I received from the race team and local community).

Do you have a goal for when you want to complete all 50 states?
I’d love to try to complete this in five years, and considering that I had to take five months off in the first year and still completed eight states, I’m on track to achieve that. But quality, not speed, is my main objective. I’m deliberate in choosing races and scheduling these trips. I can’t lose sight of the fact that I’m doing this for a greater purpose. If the location of the race isn’t a strong media market, or if the race lacks a strong infrastructure and management team, the results will suffer. It’s also important to me that I have time here at home with Taylor and my family (I also work full-time in addition to helping run Taylor’s Tale).

What states are up next for you?
I’m running the Athens Half Marathon in Georgia in late October. I hope to add one more race to the calendar before the end of the year, but I’m taking it one race at a time for now. Scheduling too many events at once in the beginning of this journey was a mistake. I believe it’s why I suffered the injury that kept me sidelined for so long.

What state/race are you most looking forward to and why?
I want to run the Tinkerbell Half Marathon in California and the Disney Princess Half Marathon in Florida because Taylor would have loved those races. If I was doing this for me, I might have chosen different races in those states; I’ve always had my eye on the race in Big Sur, for example. But this is about honoring Taylor, what she achieved and how she has lived her life in the face of incredible obstacles.

You just completed the Kauai Half Marathon last month, one of my favorite marathons. Tell us about the experience. What were the most memorable moments?
I will never forget running the Kauai Half Marathon in Hawaii, but it was about so much more than just the race. I can’t say enough good things about the race owner, Jeff Sacchini, or the marketing director, Robin Jumper. Jeff contacted me almost immediately after I sent him a link to my video (watch it here, and from the very beginning, he was all in. I learned the first time I talked with Jeff that he once guided a blind runner in the Boston Marathon, so he has a unique perspective for what I’m doing. Jeff and Robin made sure I maximized my media opportunities in Hawaii, and our story was covered by the local TV, print and radio media. They also invited me to give the closing speech at the pre-race VIP dinner, where I shared the stage with people like Olympic hopeful Tyler McCandless and met other amazing folks, including Runner’s World’s Bart Yasso and members of the community who have helped make the race the incredible event it is today. You can listen to the speech here.

Running the race was great, despite hurricanes swirling in the Pacific that led to soaring temperatures and miserable humidity. Thank you to the locals who sprayed us with hoses and gave us wet towels along the course. Otherwise, I might not have made it! I will never forget running through the famous tree tunnel or seeing the blue ocean for the first time about a mile from the end. I wasn’t able to properly train for this race while I was injured, but I crossed the finish line in 1:57 and felt grateful for it.

You can read rUnladylike’s race recap from the 2014 Kauai Marathon here and tips for traveling to Kauai here.

Do you have any tips for runners who want to dedicate their training and races to someone they love? Any tips for raising money for charity?
Always remember the reason why you run. It’s easy to get caught up in training and focus too much on your own performance, but remember there are so many people who would give anything just for the opportunity to lace up a pair of running shoes and step onto a course. I know my sister wouldn’t care if she finished last, so long as she could get out of her wheelchair and RUN as she once did. Be smart about your training and take care of your body, because you can’t help your cause if your body breaks down.

As for raising money, carefully craft your story. Be able to tell it in 30 seconds or less if needed, and ALWAYS try to connect it back to your audience. No matter how nice someone is, they’ll be more likely to support you if you’re succinct and make it relevant to their lives.

How can people connect with you and support you?
I write a blog about our journey at writethehappyending.com. People can learn more about Taylor’s Tale at taylorstale.org. I’m on Twitter (@lkedwards11), and Taylor’s Tale is on Twitter, Facebook and YouTube. If you feel compelled to give, all donations to Taylor’s Tale are 100 percent tax-deductible. We’re a volunteer-run organization and depend on donors to achieve our goals. You’ll be helping save the lives of millions of Americans – one in 10 – fighting a rare disease!

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Do you know someone with an inspiring story that should be featured on Friday FITspiration? If so, email runladylike@gmail.com.

What inspires you most about Laura and Taylor’s story? What cause is dear to your heart that inspires your running journey?