Run or Walk for Team Taylor’s Tale on January 31

By Laura Edwards

In February, I’ll knock out the first state of 2015 in my quest to race in all 50 states for my sister Taylor and the fight against Batten disease. Originally I’d planned on taking January off, but it’s been two months since Charlotte’s Thunder Road Half Marathon, and I’m antsy. So on a whim I signed up for The Village 10K in Waxhaw, right outside of Charlotte, on January 31.

I’ll be running for Team Taylor’s Tale in Waxhaw that day, and if you live in Charlotte or close by, I hope you’ll consider joining our team for the 10K or 5K event. continue reading →

Running for Taylor in 50 States: 2015 Preview

By Laura Edwards

The winter running season is long and lonely. Marked by cold, short days and diminished race calendars, it can make even the most allergic runner long for the blossoming of spring. I ran my last major race at Charlotte’s Thunder Road Half Marathon in November, and I have eight more weeks to prepare for my first race of 2015. I can’t wait to get back out there for my sister Taylor. continue reading →

Thunder Road 2014: The Magic and the Wonder

By Laura Edwards

I spent months training and long hours planning for the Thunder Road Half Marathon last year. Running the 13.1-mile race blindfolded, tethered for most of the way to my friend Andrew Swistak, gained national attention for Taylor’s Tale and our fight against Batten disease, and it gave me the experience of a lifetime. When the dream ended, I said it could never be repeated.

But it didn’t seem right to treat the 2014 edition of Thunder Road like just another race on the race calendar, especially after our friends at the teen service organization Playing for Others asked our permission to walk the Thunder Road 5K blindfolded to honor Taylor and our cause.

One week before race day, I came up with a crazy plan: run the last leg of the 2014 Thunder Road Half Marathon blindfolded – and untethered. Never mind that:

  • I’d run blindfolded just once since the 2013 Thunder Road Half Marathon (an unofficial 5K with Andrew to commemorate National Running Day in June).
  • I wouldn’t get an early start this year (thus putting me right in the crush of thousands of other runners).
  • Andrew’s sidelined with a foot injury, meaning I’d need to find another guide on short notice.

But I’ve been stubborn since I was a kid, and once I get an idea in my head, I’m tough to shake. My husband John says I always up the ante, and he wouldn’t be surprised to see me run a marathon blindfolded while juggling chainsaws if I thought it’d help our cause.

I don’t know to juggle, but I’d run blind and untethered for short stretches before. So one week before race day, I put out a call for runners aiming to run the half marathon somewhere around my goal pace. Even though I planned to run the final stretch untethered, I needed someone to help me avoid obstacles, from sewer caps and curbs to other runners. Almost immediately, my friend Alyson Vaughan responded, and I had a guide.

By the Tuesday prior to race day, I had the ear of WSOC-TV, Charlotte’s ABC affiliate and the top local station. We filmed a story about Playing for Others’ effort and my crazy plan for the end of the race with anchor Natalie Pasquarella Wednesday afternoon; while we ran/walked in the sunshine at Charlotte’s Freedom Park, Taylor had her second surgery of 2014 at Levine Children’s Hospital. As Playing for Others teen member Anna Harden guided me around the pond, I thought about how Anna and Taylor are about the same age, and I wondered if they’d be in the same circles of friends if my sister wasn’t sick. Batten disease has stolen so much.

Taylor's Tale with WSOC

The WSOC story aired Friday; see it here. All day, Alyson and I traded emails and texts about everything from purple shirts to parking plans. We didn’t have time to practice together.

On Saturday morning – race day – Mom pulled into my driveway a few minutes before 6 a.m. She’d signed up for her second 5K, and she looked fabulous in her purple running gear. But her phone rang the moment she walked through my back door. Taylor had just had a big seizure, Dad said. And just like that, Mom’s Thunder Road experience was over. “I hate Batten disease,” I said to John as my mother’s car pulled away.

It was 22 degrees when John and I arrived uptown, and I tried to keep my teeth from chattering as I did an interview with Charlotte’s NBC affiliate by the finish line (watch the story here). When Alyson arrived, we had our first and only “practice session.” I pulled the blindfold over my eyes, and we ran up and down the park milling with people in front of the baseball stadium as Alyson gave me verbal direction. We only bumped shoulders once. Then, it was go time.

I’ve been banged up since I ran the Great Smoky Mountains Half Marathon nearly two months ago, and I didn’t train for Thunder Road. But we lined up with the 1:45 pace group led by the Charlotte Observer’s Théoden Janes and hoped for the best.

Nine miles later, we were still on pace. That’s when my legs got angry. My calves were so tight I thought my muscles might pop. But when my eye caught the photo of Taylor finishing the 2008 Thunder Road 5K slipped inside my armband, the pain melted away.

Taylor's 5K finish

About 1.25 miles short of the end, we made the final turn onto S. Mint Street, a not-quite-straight road in the heart of Charlotte. I’d been running to Alyson’s left for much of the race, but when we reached Mint, I switched to her right, because I’d always run to Andrew’s right. I slipped the blindfold down over my eyes, and we headed for the finish line.

We bumped shoulders a few times, but Alyson was a pro. She helped me avoid the curb and kept me on course when the road twisted and turned. In the background, someone shouted my name; I waved and pushed ahead (I learned later that the voice belonged to my friend Sharon).

Somewhere near the end – I don’t know exactly where – we passed the Playing for Others cheer station on our right. Alyson told me we were approaching a sea of purple, but she didn’t need to say a word; I could hear the cheers and knew it had to be them.

When I ran the 2013 race, I ran the last leg with almost no one around us, because we’d gotten a 30-minute head start on the rest of the field for safety reasons. But this time, Alyson and I were running in a pack for most of the 13.1-mile race, including the final 1.25-mile leg I ran blindfolded. In a crowded finish line area, the logical thing to do would have been to slow down or even walk.

But running that last stretch, I could only think of two things: my blind sister running across the finish line of the 2008 Thunder Road 5K, and the feeling I had when I hurdled the timing mats last year and landed in my mom’s arms. The final words from Playing for Others member Anna Kilguss’ poem, words that graced the backs of the team’s shirts for yesterday’s 5K, echoed in my head: “You believe. We watch. She flies.” 

And then, we were in the finish chute, and instead of slowing to a jog or walking, I was sprinting in the darkness (like I’d always known deep down that I would), and Alyson was yelling “Jump!” and “Jump!” again as I hurdled the timing mats. The last thing I remember before getting my medal is Alyson yelling “Stop!”

crossing the finish

Tears welled up in my eyes as I simultaneously hugged my friend, received my medal, realized we’d both set new personal records for the half marathon (1:44:37) and caught a sea of purple and love in the corner of my eye – the Playing for Others crew.

Playing for Others in Victory Lane

But I didn’t cry. Instead, I lost myself in the magic and the wonder of the moment – the great beauty that can be found in even the worst tragedies if you only believe. And hours later, when I hung my eighth half marathon medal around my sister’s neck, wrapped my arms around her thin body and breathed in her courage, I soared.

Please help me write the happy ending to Taylor’s Tale. To support our fight to develop treatments for Batten disease and other rare and genetic diseases, click here.

Taylor after Thunder Road

Thunder Road: The Skinny

By Laura Edwards

Taylor with medalThe 2014 edition of Charlotte’s biggest race is less than 48 hours away. I think I’m ready for my second half marathon of the fall season (if not the bitter cold – the temperature for the starting gun is expected to be 27 degrees).

You can’t bottle the kind of magic that happened on the course at Charlotte’s Thunder Road Marathon in 2013. Every moment, from the magazine cover two weeks before race day to the heart-racing start to the storybook finish and the Runner’s World column the following spring, exceeded my expectations. The moment I put my medal around my laughing sister’s neck hours later – in the quiet and privacy of my own home – may have been the best moment of all.

But the 2014 race will have its own brand of magic. Our friends at Playing for Others bring a passionate, loving, infectious energy to the fight against rare disease, and you can’t bottle that either. I know they’ll write an unforgettable chapter when they step onto the Thunder Road 5K course with blindfolds and tethers and walk 3.1 miles in the darkness in honor of millions like Taylor.

Thunder Road finishMy mom, too, will be an angel for Taylor this Saturday when she runs her second 5k. She’ll be joined by others running in purple for the girl who refused to let Batten disease get in her way – until it did.

As for me? I’m running 13.1 miles at Thunder Road, but I’m saving my best for the final stretch.

That’s when I’ll trade light for darkness one more time and follow my sister’s footsteps home.

Want to support Taylor’s Tale and Playing for Others at Charlotte’s Thunder Road Marathon race events this Saturday? Here’s the skinny:

  • The half marathon starts at 7:45; I expect to finish between 9:30 and 9:40.
  • The 5K starts at 8:15; the Playing for Others crew could finish as early as 8:45.
  • Playing for Others is hosting an official cheer station at the corner of Graham and Stonewall (mile 13 of the full marathon course). If you want to find a pro-Taylor’s Tale crowd during the race, this is your spot!
  • All races finish on S. Mint Street behind BB&T Ballpark.
  • Find course maps here.
  • Find other race information here.
  • p.s. if you live in the Charlotte metro area, watch a feature story about our 2014 effort on WSOC Ch. 9 at 5:30 p.m. Friday.

Charlotte’s Thunder Road Half Marathon: The Next Chapter

By Laura Edwards

finish line 2We’re approaching the first anniversary of the 2013 Thunder Road Half Marathon, where the story of Taylor’s courage on the race course and in her fight against Batten disease captured the attention of people across the nation. The moment I crossed the finish line of that race blindfolded, I knew the magic of that day could never be repeated.

But I can’t stop running for Taylor, and I’m on a new mission now – a mission to run a race for her in all 50 states to spread this story far and wide. I’ve run around the rim of Oregon’s Crater Lake, where she and my parents found solace during her time in a historic clinical trial in Portland; I’ve run through Tennessee’s Great Smoky Mountains, just a stone’s throw from the village of Blowing Rock where we made a lot of happy memories together and my sister made the best “senior” flower girl ever on my wedding day; I’ve run in Taylor’s purple witch costume in a Great Pumpkin race in South Carolina to commemorate Halloween, her favorite holiday when she could still trick-or-treat. In the next 10 months, I’ll take Taylor’s story from North Dakota’s Red River Valley to Hawaii’s lush gardens.

Playing for OthersFirst, though, comes the 2014 edition of Charlotte’s Thunder Road Half Marathon, where I’ll run 13.1 miles for my little sister as she recovers from her second surgery in a difficult year. About the time I reach the four-mile mark of the half marathon, at 8:15 a.m., approximately 30 parents and teens affiliated with an organization called Playing for Others will begin the Thunder Road 5K. The parents will be blindfolded; the teens will be their guides. In completing the 5K blindfolded, they’re honoring Taylor’s story and the fight for a better future for millions of people like her.

I wish I could run my race AND be there to see Playing for Others finish the 5K. But my experience training to become a blind runner and my relationship with my blind sister have taught me that some of the most beautiful things in this world do not have to be seen to be felt.

Running for Taylor: Finishing 2014 Strong

By Laura Edwards

Great Smokies raceWhen I crossed the finish line of Charlotte’s Thunder Road Half Marathon blindfolded last fall, I knew the race would be a tough act to follow. But I didn’t intend to stop running for my sister, Taylor, and our fight against Batten disease and other rare diseases.

On National Running Day, I shared my plan to run a race in all 50 states – a feat not as rare as running 13.1 miles blind but one that I hope will help me spread our story far and wide.

With Oregon and Tennessee crossed off the list, I’m looking ahead to the remainder of 2014 and beyond. Here’s what I have in the works:

Great Pumpkin 5K Race – Saturday, Oct. 25 in Rock Hill, South Carolina

I don’t run many 5Ks, but I signed up for the Great Pumpkin 5K Race, a small event hosted by the Rock Hill Striders just inside the South Carolina border, because I want, almost more than anything where running is concerned, to see my sister at the finish line of a race. Taylor hasn’t been able to come to one of my runs since I logged 13.1 miles on a quarter-mile loop around the town green in Davidson, North Carolina for a Batten Disease Support & Research Association fundraiser in June 2012. But Rock Hill is 20 minutes from my parents’ house, and the race starts later than most, so we’ve got a shot. I’ll wear a purple Halloween costume that captures the spirit of Taylor for the Great Pumpkin 5K. Have ideas? Let me know in the comments! Want to run with me? Sign up here!

Playing for OthersCharlotte’s Thunder Road Half Marathon – Saturday, Nov. 15 in Charlotte, North Carolina

I’m not running Thunder Road blindfolded this year, but I’ve been signed up for the half marathon since registration opened in January. Playing for Others, the wonderful teen organization that made our cheer station come alive at the 2013 race, is supporting us again this fall. They have something new up their sleeves; I’ll be sharing their plan in a future post, but for now, you’re invited to join us by registering to run the 5K, half marathon or full marathon for the Taylor’s Tale team. Sign up here!

Huntersville 5K Guinness World Record Attempt

On Saturday, Dec. 13, the Charlotte Running Club will attempt to break the world record for most runners tied together while completing a 5K race. The current record stands at 116 runners, and the club hopes to have at least 200 runners. After running Thunder Road blindfolded and tethered to my good friend Andrew Swistak last year, I couldn’t resist signing up to be part of this cool event. You can still join us! You don’t have to be a Charlotte Running Club member, and there’s no cost to participate on the team, though you have to register for the race. For the $20 registration fee, you’ll get two t-shirts (race t-shirt and Guinness World Record attempt t-shirt) if you register by Nov. 8. Send an email to if you’re interested in being on the team. Do this before you register!

To 2015…

I’ve already registered for five races in 2015 including events in four states outside my home state of North Carolina. Taylor’s courage inspires me to run farther and work harder in all that I do. I can’t wait to share more of this journey with you! Want to stay up to date on my quest to run in all 50 states for the fight against Batten and other rare diseases? If you haven’t already, subscribe to the blog to get updates. Thanks for your support!

The Only Race that Matters

By Laura Edwards

Laura and TaylorThis spring, still feeling the high from crossing the finish line of Charlotte’s Thunder Road Half Marathon with a blindfold over my eyes, I decided that while there would never be another Thunder Road, I wasn’t done running for my sister.

On National Running Day, I shared my goal of running a race in all 50 states to honor Taylor’s fight against Batten disease and raise awareness of the millions like her suffering from a rare disease.

I’m almost ready. I put myself through an atypical (for me) training regimen for my first race, and I nearly made it. For the past month, I’ve been dealing with a pesky foot injury that may or may not be a stress fracture. The X-ray came back negative, and I’ve gone on a couple of longish runs without pain, so I’m going to give it a go when the race rolls around. I don’t know that I’ll post a speedy time (then again, sometimes I say that only to turn around and set a PR).

But as Mom and a friend reminded me in two separate conversations in the past 24 hours, my speed doesn’t matter. It never has, and it never should. Taylor wouldn’t care if I came in first or last. If we’re talking about a footrace, all that matters is that I give it my best every single day, even if that means I have to crawl.

In fact, if we’re talking strictly about winning and losing, the only personal race that ever really mattered was the race to save my sister’s life. And every day, I live with the knowledge that I’m losing that race.

But there will always be another Taylor.

That’s why I’ll keep chasing the monster that’s beating us.

Wouldn’t you?

Stay tuned for details about my first race in the challenge to run in all 50 states for the fight against rare diseases! Click here to make a tax-deductible donation in support of Taylor’s Tale, the non-profit organization founded in my sister’s honor.

Back in the Dark

By Laura Edwards

I find that having an almost naive belief that most everything is possible fuels a mindset that can accelerate movement from the impossible to possible. ~Bradley Davis

start of blind runNearly seven months have passed since I last ran without the gift of sight. Special forces were at work the day I covered 13.1 miles in the dark at Charlotte’s Thunder Road Half Marathon. They were, and will always be, the most important miles of my life.

But while there won’t be another Thunder Road – at least not like that – some small part of me always knew the blindfold hadn’t served its last mission. Today is National Running Day. On this day last year, I took my first steps as a blind runner. Twelve months later, we’re closer to our goal, but Batten disease continues to steal the lives of kids whose voices I’ve heard and hands I’ve held. It’s winning the battle for my sister. That’s why tonight, I met my friend and guide, Andrew Swistak. I pulled down the blindfold, took one end of a short bungee cord and ran into darkness.

For days, I’ve wondered if blind running would be anything like riding a bike. After all this time, would it be like starting from scratch? Would I run into Andrew’s path or sprain my ankle on a manhole cover or speed bump – simple irregularities the sighted world doesn’t notice, but dangerous obstacles to people like my sister?

blind run on trackIt’s not quite like riding a bike, but we fell into an easy rhythm and even had a conversation as we ran. We didn’t take any chances, stopping to walk over the curb that claimed my ankle on this day last year. We headed for the middle school track where I first squeezed my eyes shut and ran forward on a wing and a prayer. There, Andrew took both ends of the bungee cord, and I ran untethered, as I did several times during the race. On the straightaways, we gathered speed, reaching a low to mid-7:00/mile pace. I remember thinking how important it was to have Andrew as my eyes when he gave me the signal to turn. I felt so light – so free – in those moments of running untethered that I would have gone on forever.

We stopped when we reached the 3.1-mile mark, appropriate considering that the 5K was Taylor’s distance. Tonight wasn’t a race, but I still asked Andrew about our splits and overall time. We ran it in 26:50, good for about an 8:38/mile pace despite the stops and walks for safety.

Even throughout our training runs last year, I always had to remind myself that it wasn’t about speed. It was about getting the story out there; it was about finishing the race; it was about something bigger than either of us.

But while none of my runs – blind or sighted – are really about speed – the fight against Batten disease is. Because with every day and week and month, with every year that passes, we have to say goodbye to more kids. I’m not ready to say goodbye to my sister. I’ll never be ready to say goodbye to her. I know that a 6:00/mile won’t get us anywhere more quickly than an 8:00/mile. If I don’t get a great time in my next race, I’ll be okay with that. But I’m not going to let Batten disease kick my ass in the race that matters.

After Thunder Road

By Laura Edwards

635205790014799504 2Almost seven months ago, I ran the biggest race of my life. When I crossed the finish line at Charlotte’s Thunder Road Half Marathon and removed my blindfold to fall into my mom’s waiting arms, I knew I’d never feel that way again.

But that didn’t mean I was ready to quit running or fighting. After all, Batten disease hasn’t quit. It’s still doing its dirty work. My sister still suffers, and children still die. We still don’t have a treatment for Batten disease. We still have 350 million people fighting one of 7,000 rare diseases. We still don’t have an FDA-approved treatment for 95 percent of those diseases.

In the seven months that have passed since I hurdled the timing mats under the giant ‘FINISH’ banner as my guide, Andrew, yelled “Jump!” and then “Jump!” again, I’ve thought long and hard about the answer to one simple question: “What next?” While many of our friends talked about the next blind run before the tears we cried at Thunder Road were dry, I always knew in my heart that there would never be another Thunder Road – at least not like it was on November 16, 2013. That day was its own moment in time. No one can take it away from us, and it can’t be replicated.

During my months of training to become a blind runner and far more so in the months following the race, my sister slipped farther down the chasm of Batten disease. It is a deep, dark chasm. There are no footholds for climbing out, and some days, no light reaches her ledge. And yet, each day she teaches me something new about courage; each day, she imparts some great piece of wisdom without having to say anything at all.

Thunder Road finishTaylor with medalSeven weeks before the diagnosis, Taylor and our cousin, Morgan, hung Hawaiian leis around their necks and chased fireflies across the grass, their bare shoulders bathed in the soft moonlight and their laughter in our ears. That night, Taylor told me she wanted to go to Hawaii. We never made it to Hawaii, and in November, my sister couldn’t come to the finish line at Thunder Road. Travel isn’t really in the cards for her now. She won’t see the world or experience all of its wonders. But the world will lose more when it loses Taylor.

Taylor can’t travel, but I can. And I vowed to run – and fight – for her until my body gives out or we beat Batten disease, whichever happens first. So this summer, I’ll begin a quest to run a race for my sister in all 50 states. Everywhere I go, I’ll take her story with me.

I have a pretty good race lined up to kick things off, but I’m not sharing details just yet. Stick with me for a few more (thousand) miles. 4Taylor. We’re going to write the happy ending to this tale.

Today is National Running Day, and I’m inviting you and your friends and family – runners and non-runners – to run for Taylor, too. Run a mile or two or 20; run fast or slow; run wherever you’d like; the how and the where aren’t important. Just remember that once upon a time, my blind sister looked Batten disease in the eye, said, “You can’t stop me,” and ran a 5K race. Twice. That’s how my sister lives her life. That’s how I try to live mine.

If you run for Taylor today, I want to hear about it! Leave a comment here, or share your story with Taylor’s Tale on Facebook or Twitter.