National Running Day 2015: Looking Back, and Ahead

By Laura Edwards

Today is National Running Day, a “coast-to-coast celebration of running.” On this day last June, I put on a blindfold and ran an unofficial 5K to honor my sister, Taylor. I cherish my vision; blindness is one of the many terrible things about Batten disease. But there is something magical about running blind for my sister that I’ve never quite been able to describe.

That blind run on neighborhood streets and a school track was the first time I’d run in real darkness – the kind of darkness that forces you to trust yourself and your guide and a higher power – since running Charlotte’s Thunder Road Half Marathon blindfolded in November 2013. 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 →

Running for Taylor in 50 States: South Carolina

By Laura Edwards

When 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.

In August, I placed fourth in Oregon’s 13-mile Crater Lake Rim Run. Five weeks ago, I placed second in Tennessee’s Great Smoky Mountains Half Marathon.

This morning, I hopped across the border to South Carolina for the Great Pumpkin 5K and state number three.

I picked the race because of its proximity to Charlotte; the Great Pumpkin 5K is run mostly on or near the Winthrop University campus in the town of Rock Hill, less than 30 minutes from where all of my family lives in south Charlotte. Taylor’s health is declining, and I haven’t seen her at a race in a long time.  As much as I love running, I always try to remember why I run. I picked the Great Pumpkin 5K as my South Carolina race because I wanted Taylor to be the first person I hugged at the end.

Usually a stickler for race preparation, I broke almost all of the rules this week. I stayed up late every night and gorged on junk food at an office Halloween party on Friday. I ran very little in the two weeks leading up to the race after suffering a bad ankle sprain hiking in Utah earlier this month. It was still sore when I went for a quick jog this week, but I just gritted my teeth and watched out for potholes.

I have a closetful of performance running apparel. But two hours before the race, I pulled on a long dress made of fake crushed velvet and purple sequined lace and a floppy, matching hat. The stuff wasn’t made to wick sweat.

Great Pumpkin 5K with Dad

But it was Taylor’s Halloween costume three years ago – the last time she went trick-or-treating. That made it magical.

Taylor in costume

I got out to a quick start. I slowed a bit midway through the race as my ankle began to throb. But I got a boost from the spectators sprinkled along the course as they shouted encouragement. Running a 5K in full costume is an effective way to attract attention. I wish I’d had a handful of Taylor’s Tale wristbands to launch at them; alas, the purple witch costume doesn’t have pockets, but I can yell “Visit!” like my life depends on it.

With about half a mile to go, I knew I was near the front of the pack. I found another female runner to “draft.” I settled into a comfortable pace and waited till the final turn to pass her and accelerate into a full-on sprint. Don’t knock the purple witch dress; it’s more aerodynamic than you’d think.

sprint to the finish

I crossed the finish line 12th overall and first in my division.

I got a big hug from my husband, John, and my dad. Later I got a hug from the runner I’d passed in the last half-mile, a woman named Dianne in the masters division. She ran Thunder Road last year, and she knew our story. I gave her the wristband on my arm as we waited for our age group awards and the morning sun warmed our skin, and silently I reaffirmed the importance of these runs for the thousandth time.

Great Pumpkin awards

But I never got to hug my sister at the finish.

Nothing about Batten disease is easy. But 2014 has been an especially rough year for Taylor. This year, my sister stopped talking. She ran two 5Ks blind, but now she’s in a wheelchair. She got a feeding tube in June. She’s been to the emergency room multiple times. Batten disease is a monster. And Batten disease is winning the battle for my sister.

All week we’d hoped Taylor would be able to come to the race, because that would mean she was having a “good” week. But yesterday was a really bad day. Yesterday marked another milestone for Taylor, and in my sister’s world, milestones aren’t a good thing. Milestones represent another rabbit hole; another point-of-no-return.

I hate Batten disease so much. I hate what it’s doing to my sister and the people I love. I hate that the Halloween Taylor wore the purple witch dress feels like a million years ago, because figuratively speaking, it was.

But I’ve got more races to run and stories to tell, and Taylor’s Tale has great work left to do. While I don’t know what the future holds, I know Taylor and I have tomorrow. And tomorrow is always something worth fighting for.

Make a tax-deductible gift today and help write the happy ending to Taylor’s Tale.

family after race

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.

National Running Day, a Nod to the Past, and a Glimpse of the Future

By Laura Edwards

blindfolded run 1National Running Day, held annually on the first Wednesday in June, is a national celebration of running. Since 2009, runners everywhere have marked the day by celebrating their passion for the sport.

In the final hours of National Running Day last year, I jogged to a middle school track under an inky, starless sky. There, on the asphalt oval worn smooth by the pounding of thousands of adolescent-sized shoes, I took one end of a short bungee cord in the palm of my hand and squeezed my eyes shut; led by the voice of my friend and guide, Andrew Swistak, I began my initiation as a blind runner.

I ran in darkness eighteen times prior to taking on the biggest race of my life, Charlotte’s Thunder Road Half Marathon, on November 16, 2013. Nothing about my training or the race ever came easily, but I said then, and still feel today, that the near-two hours I spent on that course embodied the most incredible experience of my entire life, something that can never be repeated or recaptured.

Shortly after the race ended, everyone asked, “What next?” We accomplished almost everything we set out to do. We raised money for the fight against Batten disease. We had one of the largest teams at Charlotte’s biggest race. We achieved local, state and national media coverage including the cover story in North Carolina’s Endurance Magazine and a nod in Runner’s World magazine. In fact, as I reflected on the race in the hours and days after I hurdled the timing mats at the finish line and buried my face in my mom’s shoulder to cry, I realized that I had just one regret: my sister, Taylor – the inspiration for it all – had declined so much during my months of learning to run 13.1 miles without the gift of sight that she wasn’t well enough to come to the finish line.

And so, as the monster called Batten disease continues to rob bits and pieces of my sister and the lives of children like her, whose hearts hold great love and whose lives once held great possibility, I continue to fight. When people asked me when I’d run another race blindfolded, I said there wouldn’t be another blindfolded race. I can’t reproduce the singular magic of what happened that day, and I won’t try.

But this Wednesday, to celebrate National Running Day and my sister’s courage that still shines like the bright beacon in a storm, I’ll don the blindfold one more time; Andrew will lead me as I run into darkness, and the future.

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.

As for the future…I may be running Thunder Road with my own two eyes this fall, but I have some pretty special things in store. Check back later this week to learn about my next challenge. This fight’s not over. Not even close.

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

Finding My Sea Legs

By Laura Edwards

This fall, I’ll run Charlotte’s Thunder Road Half Marathon blindfolded to honor the five-year anniversary of Taylor’s first 5K, raise awareness of Batten disease and support the gene therapy research Taylor’s Tale is co-funding at the University of North Carolina Gene Therapy Center. Last Wednesday, I celebrated National Running Day by going on my first trial run with my sighted guide, Andrew Swistak. Six days and one twisted ankle (mine) later, I felt ready for round two.

Shortly before 10 p.m., I wrapped my bum ankle and met Andrew at my mailbox with our lifeline, a three-foot bungee cord, draped over my shoulders.

Last week, I ran sighted for about 10 minutes to get used to the feeling of being “connected” to someone, and I practiced running with my eyes closed on a middle school track before we headed out into the unmarked, obstacle-riddled world.

This week, I closed my eyes as soon as I felt Andrew’s grip on the other end of that bungee cord. “Let’s go!” I said. I felt none of the roller coaster sensations I experienced when I closed my eyes at the beginning of our first run.

We ran 5.45 miles in 1:01:50 – good for a leisurely pace of 11:21 per mile – including multiple stretches during which we inched our way through a narrow, fenced path, waited for oncoming cars and stopped to step over speed bumps out of respect for my ankle. But we talked throughout the run (I talked about my sister a lot), and my ankle held up like a champ. When Andrew delivered me back to my driveway a few minutes before 11 p.m., long after most of the lights in the windows on my cul-de-sac winked out, I felt the meaning and the magnitude of this run – and our battle for people like Taylor – within every fiber of my sweat-soaked, adrenaline-charged body in the muggy, quiet June night.

Wind, rain and thunder pounded our neighborhood just 30 minutes ago, but all signs point to clear skies by later tonight. If you live close by and happen to be up and about in three or four hours, you might just catch a glimpse of two runners connected by a three-foot bungee cord and a shared mission, cutting through the black night, running toward the light.

I am running the Thunder Road Half Marathon to support gene therapy co-funded by Taylor’s Tale at the University of North Carolina Gene Therapy Center. Donations to this cause are 100 percent tax-deductible. To support my run and our fight to develop treatments for Batten disease and other genetic diseases, click here.

Running in the Dark

By Laura Edwards

Two nights ago, I ate an early dinner and waited for several hours to give my grilled cheese, my apple and my neighbors a chance to wind down. Then, I donned a reflective hat, strapped on my Garmin watch and laced up my running shoes. With a bungee cord in hand, I jogged .7 miles under inky, starless skies to the home of my friend, Andrew Swistak, a fellow runner who works at The Fletcher School, where my sister, Taylor, spent six wonderful years.

Just after sunrise on the morning of Nov. 16, I will pull on a blindfold after I lace up my shoes, and Andrew will guide me through the 13.1-mile Thunder Road Half Marathon course on the streets of my hometown of Charlotte. I will attempt to run the entire race without the gift of sight to honor the five-year anniversary of Taylor’s first 5K race, which she ran in conjunction with the 2008 edition of Thunder Road with the help of an older student from Fletcher.

But on this night – National Running Day and my first training run with Andrew – I had no blindfold and, with corrective lenses, perfect vision. Our goal for the evening was to get accustomed to running with the bungee cord.

blindfolded run 1

Early on in our run, though, Andrew took me to the track at the middle school by our neighborhood so we could get used to making turns. And in that protected environment, he asked me if I wanted to give blindness a try, at least for a minute. So I closed my eyes.

Right away, I lost my spatial awareness. The bottom dropped out from under me. My legs turned to Jell-O, and my body felt as though it was not my own. I couldn’t run in a straight line.

But soon, with Andrew’s help, I found my bearings in my dark world. I think we ran five laps around the track. Andrew said that for the most part, I stayed in my lane, even on the turns. I learned to understand the meaning of his tugs on the bungee cord. After a while, we left the track and returned to the neighborhood. I figured out how to make 90-degree turns and 180-degree turns and shift to the side for an oncoming car. At one point, Andrew asked me if my eyes were really closed. And they were.

I thought I’d mastered running blind – albeit much more slowly than I run sighted – until I mistimed a curb jump and twisted my ankle. And in that moment, I remembered that NOTHING about blindness is easy, just as nothing about this race will be easy.

But nothing about Batten disease or rare diseases is easy, and nothing about our fight to save people like Taylor is easy. And a twisted ankle on my first attempt isn’t enough to stop me. An ACE bandage, an ice pack and a couple of days’ rest work wonders for such injuries. And besides, going to work with an ice pack taped to my ankle gave me a natural opening to tell plenty of people about my blindfolded run and the reason behind it, so we spread Taylor’s Tale this week.

And I have a great guide in Andrew Swistak, not to mention a healthy dose of inspiration. There will be no twisted ankles on Nov. 16. We’ll be ready.

I am running the Thunder Road Half Marathon to support gene therapy co-funded by Taylor’s Tale at the University of North Carolina Gene Therapy Center. Donations to this cause are 100 percent tax-deductible. To support my run and our fight to develop treatments for Batten disease and other genetic diseases, click here.