Thunder Road: The Details

Published: November 7, 2013 ~ 3

By Laura Edwards

I hatched the crazy idea to run a half marathon blindfolded for my little sister all the way back in the spring, and I ran blind for the first time five months ago. I’ve never spent this much time training for any race, and I can’t believe the big day is almost here. But in just nine days, I’ll put on a blindfold and run the most important 13.1 miles of my life to honor Taylor’s courage and support the fight against rare and genetic diseases. A lot of you will be part of the effort on race day – as a runner, cheerleader or supporter from afar. With some help from the Taylor’s Tale team and our friends at Run For Your Life, I’ve been tying up loose ends behind the scenes between training runs, media coordination and regular life stuff, like work and sleep. Check back throughout the next week for last-minute details, but the following should provide most of the information you need to be part of the effort on Nov. 16:

If you’re running:

You have until Sunday, Nov. 10 at 11:59:59 ET to register online here. If you miss the deadline, you’ll have to register at the race expo on Friday, Nov. 15. There is no race day registration. IMPORTANT: on the second page of online registration, under the option that says “Event Groups/Teams,” select “Taylor’s Tale” as your team. Note: if you already registered and did not select Taylor’s Tale, contact me using this form.
Thanks to the generosity of two donors, we will have the ability to provide Nike Dri-FIT shirts in Taylor’s Tale purple to the first 40 runners who register to run for Taylor’s Tale. If you have officially registered to run, please contact me using this form with your preferred shirt size (men’s sizes only) and the best way to get in touch with you on Friday, Nov. 15. We will establish a pickup location for the shirts. If you cannot coordinate a pickup or are not one of the first 40 runners, please try to wear something purple and help us “turn Charlotte purple” for Taylor on race day.
If you are running the half marathon, you are invited to join my guide (Andrew Swistak), Dr. Steven Gray of the UNC Gene Therapy Center and me. I will receive an early start time (7:15 a.m.) for safety; the official start time is 7:45. Our estimated pace is 9:00/mile, and we expect to be alone on the course for approximately eight miles before the leaders catch us. If you start early, you will not be eligible for awards.
If you are running the half marathon, the crowd at the official Taylor’s Tale cheer station will give you one last boost of energy on the final mile, near the corner of Martin Luther King Jr. Boulevard and S. McDowell Street. Keep your eyes and ears peeled for a bunch of people wearing purple and jangling cowbells!
Optional: remember why you run! Shirts will be screen printed with “Team Taylor’s Tale” and our website on the back. Save a few breaths to tell fellow runners and spectators about Taylor’s courage and our fight against rare diseases.

If you’re cheering:

Taylor’s Tale will have an official cheer station sponsored by Michelob Ultra. It will be located on mile 12 of the half marathon course near the corner of Martin Luther King Jr. Boulevard and S. McDowell Street. This is a prime location about one-third of a mile from the finish line. View a course map here.
Supporters will receive free Michelob Ultra and cowbells.
Arrive by 8:30 to get settled and ensure that you don’t miss Andrew, Steve and me as we run by en route to the finish line!
IMPORTANT: Runners will vote on the best cheer station, and the winning station will receive $1,000 to donate to charity! You can help us win $1,000 for Taylor’s Tale and the fight against Batten disease. To learn more about the contest, click here.

If you can’t make it to Thunder Road:

Running a race blindfolded to commemorate the five-year anniversary of Taylor’s first 5K is the best way I know to honor her determination in the face of the world’s most tragic disease. But being part of finding the treatment that saves people like Taylor would be the ultimate way to honor my sister and others like her. Even if you can’t make it to Thunder Road, you can be part of the fight to save lives.
I’m running Charlotte’s Thunder Road Half Marathon to support gene therapy research at the University of North Carolina at Chapel Hill (UNC). We announced funding for this important work on Rare Disease Day this year (Feb. 28) along with a coalition of other non-profit organizations, all founded by families fighting Batten disease. This work holds incredible promise for not only Batten disease, but many other devastating illnesses including Alzheimer’s disease, Parkinson’s disease and ALS (Lou Gehrig’s disease). If funding continues, we could have a clinical trial for kids like Taylor in just a few short years.
To make a gift and help keep the dream alive at UNC, click here. You can make a gift online or by mail. Taylor’s Tale is a 501(c)3 non-profit organization, and gifts are 100 percent tax-deductible.

That’s it for now, but stay tuned for last-minute details. I hope you can join us on the road!

Crunch Time

Published: November 2, 2013 ~ 1

By Laura Edwards

Two short weeks from now, the finish line of the Thunder Road Half Marathon will be behind me. After five months of training and countless lessons about my sister’s dark world, it’s hard to believe that it’s almost here – and that once we cross the first timing mat, the journey of a lifetime will be complete in about two hours’ time.

We’ve gotten some great media coverage and have more on the way. If you live in N.C., pick up a copy of the November issue of Endurance Magazine. Taylor’s amazing story of courage on the race course made the cover! Click here for a note from the editor about the article. The South Charlotte Weekly ran a nice article a few weeks ago. The Charlotte Observer will print a story about our upcoming race tomorrow. We have more TV coverage on the way as well.

Wednesday night just before 10:30, Andrew and I embarked on a 4.11-mile run on the twisty streets of our neighborhood. Encumbered by the cul-de-sacs, speed bumps and rumble strips that have accompanied so many of our training runs, we checked in at a 9:43/mile pace. When my friend and guide dropped me off at my mailbox at the end of the run, I didn’t have a scratch on me and had two healthy ankles – both good signs. I haven’t fallen since my crash landing in mid-August – still my only accident throughout five months of training for Thunder Road. But as I read and reread the stats for our run, I knew I wanted to get FASTER.

10-mile run

This morning, Andrew and I headed to an office park area south of our neighborhood – the site of my longest blindfolded run to date – for just our second daytime run. I strapped on my new Camelbak water bladder pack; crowded water stations aren’t the place for a blindfolded runner, and the pack is a great solution for my hydration needs and all of the other random things I need for a long run (license, health insurance card, Shot BLOKS, etc.).

I wanted to run 10 miles today. The last time we went to the office park, we ran up and down one road that has light traffic on Saturday mornings, hills to train for Thunder Road (not known for being flat) and a chance to practice our turns. Andrew asked me if I thought I’d get bored running the same stretch for 10 miles, to which I responded, “It makes no difference to me!” After all, when you’re blind, the scenery’s all the same.

Running in a dark world as the fog lifted to reveal a bright, sunny day in Charlotte, I could have let my imagination take me wherever I wanted to go. But I stayed grounded, both for safety and to remember every moment of what may have been the last time I put on a blindfold before race day. I felt the sensation of cars as they passed, even though they moved to the center lane to give us room (we didn’t have any encounters like the first time we ran on that road, when a driver in a Porsche flew by and scared me so badly that I jumped into Andrew and almost knocked him over). I felt the “corrugated” texture of the bridge of the interstate beneath us and asked my guide to help me avoid the painted white lines on the road, because they felt slick.

Andrew 10-mile run

I also heard the voices of other walkers and runners. Andrew narrated their reactions to the crazy blindfolded girl wearing a purple backpack, most of which began as shock, then changed to slow recognition and finally a big grin and, sometimes, a thumbs up or a wave. We stopped to talk to two of the runners, one of whom teaches at The Fletcher School, the school Taylor attended for six years. I didn’t realize until later that without even thinking about it, I removed my blindfold long enough to say hello – which Taylor couldn’t have done. It felt like the polite thing to do, but when I pull that blindfold over my eyes, I really do want to blind myself – to experience my sister’s world and to remove all of the privileges that come with being sighted. I don’t intend to take off the blindfold at any point during the race. I’ve solved the water station issue, but more recently, I’ve thought about awkward things like restroom breaks, and whether or not I can skip them for 13.1 miles. I can hold it for 10. I think I’ll just force myself to hold it for 13.1.

Andrew and I reached our goal, after all. We logged 10 miles, my longest blindfolded run by far. We hit about an 8:45/mile pace, good for 1:27:42 even with a couple of stops for SHOT Bloks and the quick visit with Andrew’s friend from Fletcher. My PR for ANY 10-mile run is 1:20, set at the Tar Heel 10 Miler this April. So I feel great about what we accomplished this morning!

I’ll share a secret with you, too: for a brief period of time during today’s run, Andrew cut me loose. I ran down the center of the quiet street, the bungee cord that is my lifeline coiled up in my left hand, my guide just a few steps away. I picked up my speed, and I felt free as a bird. During those fleeting moments, I felt my sister’s presence. And I didn’t fall.

I will run the Thunder Road Half Marathon blindfolded 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.

Join the Taylor’s Tale team and help us turn Thunder Road purple for Taylor! Click here to register for the marathon, half marathon or 5K. On the second page of registration, under “Event Groups/Teams,” select “Taylor’s Tale” from the list under “Choose an Existing Group.” Wear purple and run for us to help raise awareness on race day. If you’d rather cheer, stay tuned for details about the official Taylor’s Tale cheer station on the course! Contact me with any Thunder Road-related questions.

Fuel for the Journey

Published: October 27, 2013 ~ 5

By Laura Edwards

A couple of weeks ago, Andrew and I broached the topic of hydration for the upcoming Thunder Road Half Marathon. Thunder Road, like most races of any considerable distance, offers water stations every two miles along the course. But if you’ve ever run a race with water stations, you know they’re a human traffic jam. I always try to slow down enough to avoid sloshing water or Gatorade down the front of the volunteers (often kids and their parents) manning the stations as I take a tiny paper cup. But a lot of runners come through the water stations like an animal stampede, and the stations at some of the bigger races are a mishmash of tangled legs and sweaty bodies and spilled water and electrolyte replacement drinks.

That said, Andrew and I decided weeks ago that the water stops at Charlotte’s largest race are the last place a blindfolded runner and her sighted guide want to be. But I can’t run 13.1 miles without water. I’ve never liked the fuel belts that hold small bottles of water and strap around your waist, and I worried that I wouldn’t be able to take the bottle in and out of the belt on the run without my vision. I often carry a water bottle on my longer solo runs, but on race day, I’ll have the bungee cord in my left hand and want to keep my right hand free.

hydration pack

My brother, Stephen, is into mountain biking and suggested I buy a small Camelbak pack with a water bladder. I’ve hiked hundreds of miles in America’s national parks, but my hiking pack isn’t what you’d call road race material. So this afternoon, I went to REI and bought a purple Camelbak pack. I’ll need to take it on the road a few times before the race to get used to the extra weight and bulk, but I’m excited that I solved the water station dilemma.

I ran 10 miles close to my target pace yesterday and followed up with a 5.2-mile run today. My ankle injuries of summer and early fall seem like distant memories, but I’m not taking any chances. And with the Camelbak purchase, I’m almost set for Thunder Road.

The purple pack will provide my body with fuel for my 13.1-mile journey in the dark. And while conventional wisdom tells me there’s nothing more important than water for survival on the race course or in life, I’ve got something much stronger fueling my fire to complete the race of my life and keep fighting long after Andrew and I cross the finish line.

I’ll let you in on a little secret: seven years ago this past July, I promised my little sister I’d save her life. But I haven’t succeeded, and now, all of a sudden, Batten disease is running a lot faster than me. That makes me mad as hell. I don’t like to lose, especially when people I love get hurt. And THAT, more than the coldest, freshest water or the world’s best sports drink, is my fuel for the journey in the fight of our lives.

The Real Heroes

Published: October 26, 2013 ~ 4

By Laura Edwards

Taylor finished the 5K race at Thunder Road in 2008 guided by two angels and the wings of her own courage.

Three weeks from today, I’ll run the biggest race of my life. I’ve run Charlotte’s Thunder Road Half Marathon three times since 2009, but on Saturday, Nov. 16, I’ll run it blindfolded.

Late Wednesday night, I went out for training run number 16 with my pinch runner – my husband, John. The temperature dipped below 50 degrees for the first time this autumn. I left my black tights at home to make myself more visible to passing cars, and though I didn’t see the goosebumps on my legs, I felt them. I called out manholes and irregularities in the road to my inexperienced pinch runner – not the other way around – but I stayed on my feet and didn’t suffer any sprained ankles throughout 2.18 slow miles.

As much as I love my husband and appreciate his willingness to take me out for a run at 10:15 on a weeknight, I can’t wait to get back on the road with my friend, Andrew Swistak, a seasoned runner born to lead the blind(folded). I feel safe when Andrew’s on the other end of the bungee cord, even though I had a crash landing on one of our training runs back in July. With my friend’s coaching in my first race of 2013, I conquered a nasty hill at mile eight, found energy I didn’t know I had at mile nine and set a new personal record (PR) for 10 miles. With Andrew’s help, I believe I can run not only a safe race, but a FAST race for Taylor at Thunder Road in three weeks.

But this isn’t about me, and it’s never been about me. So more than a fast time or an injury-free race, I’m hoping for this: that my 15-year-old sister, who’s had a rough few months in her fight against infantile Batten disease, will be well enough to come to the finish line. I want her to be the first person I see when I take off my blindfold. I want her to be there so I can give her a sweaty hug and tell her how much I love her, even though she can’t say “I love you” back.

Because the battle Taylor fights every day is a thousand times tougher than running a race in the dark.

I’ve spent hours blindfolded, but I’ve never been blind. I’ve vowed not to remove my blindfold at any point during Thunder Road, but if I wanted to see the endless sky above my head and the pavement beneath my feet and the bare November branches and the crowds lining the streets, I could do so.

I’ve never been blind, but I think that perhaps losing sight of the real purpose is the worst kind of blindness.

Taylor, and the several thousand others living with Batten disease, and the millions of people worldwide facing a rare disease without a single approved treatment or cure, are the real heroes.

The moment I forget that – the moment I make the story about myself – I’ve lost my way, and even Andrew won’t be able to lead me back.

Join the Taylor’s Tale team and help us turn Thunder Road purple for Taylor! Click here to register for the marathon, half marathon or 5K. On the second page of registration, under “Event Groups/Teams,” select “Taylor’s Tale” from the list under “Choose an Existing Group.” Wear purple and run for us to help raise awareness on race day. If you’d rather cheer, stay tuned for details about the official Taylor’s Tale cheer station on the course!

My Sister’s Legacy

Published: October 22, 2013 ~ 0

By Laura Edwards

My sister has a 501(c)3 non-profit organization named for her. She’s the face of Taylor’s Tale and the inspiration for the work we do. People from North Carolina to California and the United States to Australia have heard of Taylor King.

We could name a building or a wing or a monument or a garden for my sister. We could adopt a mascot influenced by all of Taylor’s favorite things. We could put her name on an annual event to make it more difficult for the public to forget her.

But none of those things will help future Taylors. None of those things will save lives.

My sister’s very sick. We’ve never denied that fact. We’ve fought like hell to keep her healthy. We’ve fought like hell to beat Batten disease till it couldn’t come back.

But now, tomorrow is today. I run as fast as I can, but some days, I just can’t run fast enough.

I fight for Taylor because I love her. I fight Batten disease because I hate its guts. I fight rare diseases because I don’t think 350 million people deserve to be told their disease is “just too rare.”

But I don’t want a trophy for anything we’ve accomplished. Batten disease is still killing kids, so we haven’t achieved what we set out to do. And I think Taylor’s life is worth more than a thousand trophies.

I just want an answer for people like her. I BELIEVE we’ll get there. And one day soon, when scared parents sit in the bad news chairs in a doctor’s office somewhere and the doctor says, “It’s very serious, but this is what we’re going to do together to fix it,” THAT will be her legacy.

My little sister turned 15 in August. I can’t talk with her anymore, but her smiles and laughs offer a glimpse of the Taylor I know is still in there, bottled up and fighting, always fighting against the monster in her genes. Her quiet courage has inspired people across the globe to fight for a better world for people like her.

That may just be her greatest legacy of all.

One Month to Go

Published: October 17, 2013 ~ 0

By Laura Edwards

This is it. One month to go. On Saturday, Nov. 16, I’ll rise before the sun. I’ll go through the familiar process of shuffling into the kitchen to eat a bagel and drink a glass of water, pulling a chilly, purple tech shirt and tights over goose-pimpled skin and lacing up my Brooks shoes on the back doorstep. I’ll snap my Spibelt pack around my waist, stuff a few energy chews into my pack, check my phone’s battery life and pin my race bib onto my shirt. I’ll sling a short bungee cord over my shoulders. I’ll make my way to uptown Charlotte. And sometime between 7:15 and 7:45 a.m., I’ll temporarily blind myself with a purple blindfold. It won’t be the first time I’ve blinded myself. But it’ll be the moment my sighted guide and I have worked toward for months.

I don’t know how much I expected to have to train for a blindfolded half marathon. More than 20-odd times, that’s for sure. But last night, we logged just our 15th training run in four and a half months. I hope we have a few more practice runs in the weeks to come, but even if we don’t, I believe Andrew and I could run the Thunder Road Half Marathon tomorrow. We ran 4.05 miles after much of the neighborhood went to sleep last night. Our speed still isn’t where I want it to be, but I think that the twisty roads, speed bumps and cul-de-sacs have something to do with that, too. I can’t wait for the freedom of the race course.

On race day, pace/speed will NOT be my main concern, but I think I – WE – have it in us to post a great time. And if the going gets tough, I know that all I’ll have to do is visualize my sister running her first 5K on that same course five years ago, facing the world’s worst disease but refusing to let it stand between her and the finish line or the life she wanted to live. I know that the image of her living her dream will stay with me for all 13.1 miles as I run to the light.

We have a lot to run for.

Are you with us? Read on to find out how you can join us on race day, either in person or from afar.

Join the Taylor’s Tale team at Thunder Road! Click here to register for the marathon, half marathon or 5K. On the second page of registration, under “Event Groups/Teams,” select “Taylor’s Tale” from the list under “Choose an Existing Group.” Run for us to help raise awareness on race day. Stay tuned for more details, including special shirts for team members and an informal post-race event! If you’d rather cheer, stay tuned for details about the official Taylor’s Tale cheer station on the course!

A Spidery Web

Published: October 13, 2013 ~ 0

By Laura Edwards

Halloween front porch

Autumn hasn’t yet arrived to paint my hometown of Charlotte with its palette of brilliant crimson, gold and flame. But when I went for a solo run to train for the Thunder Road Half Marathon this afternoon, kids played in their Halloween costumes in cul-de-sacs, and the smoky sweetness of fall hung in the air. Pumpkins destined to become jack-o’-lanterns dotted every other front porch.

Just as I found my stride, my mind began to wander to memories of my grandmother. Born on Oct. 31 in 1940, Grandma Kathryn loved Halloween. I called her my Halloween witch, but if she was a witch, she was more like Glenda the Good Witch of the North than her green-hued sister from the West or her ill-fated, ruby slipper-wearing sister from the East. Born on Halloween, she never did a ghoulish thing in her life, instead living a life every bit worthy of the angel wings she received this past Christmas Day. She was far too young to go, and sometimes I think that maybe she was just too good for this world – that God had a greater purpose for her in a place we can’t even imagine. I haven’t always lived my life with honor, but she did, and when I go about my days now, I try to think about what my grandmother would have done before I act.

A love of Halloween is something my sister and my grandmother shared. Taylor’s a girly girl to the core, so a holiday based on a big game of dress-up suited her just fine. She didn’t even much care about eating the candy. But a couple of her costumes “required” eye makeup, blush and a touch of lip gloss. My sister once decorated herself and the cream-colored rug in our parents’ dressing area while sampling all of our mom’s cosmetic products. She couldn’t wait to wear makeup, even as a toddler, and Halloween gave her an excuse to wear lipstick way before she turned 16.

Then, of course, Batten disease crashed into our lives in 2006, the year Taylor turned 8. It didn’t so much crash into my sister’s life as slide into it, because while all of us absorbed our new, terrible knowledge about the progression and ultimate outcome of a disease we’d just met and figured out how to fight it, Taylor remained an oblivious third grader with some night vision loss and learning difficulties.

As the years passed, Taylor, too, got tangled in the spidery web that is Batten disease. In a cruel, ironic twist, what used to be one of her favorite nights of the year became a twist of the knife in all of our backs, including hers. As my sister’s vision and mobility worsened with time, navigating the neighborhood streets during trick-or-treating became more and more difficult. More painful than that, though, was watching as she stood in the open doorways of neighbors who didn’t know about her illness, and the neighbors waited expectedly for her to reach out and take candy from the outstretched bowl. When she stood there motionless – because she couldn’t see the bowl – John, my dad or I reached out in silence to take a few pieces of candy and drop them into Taylor’s trick-or-treat bag.

The only thing that stopped me from losing it in those moments was the sight of my sister on all of those front porches, blind and quickly losing her footing on a slippery slope above the deep, dark chasm of Batten disease, nevertheless standing stick-straight, her shoulders back and her head held high, wearing her Halloween costume like a champ.

Running with the Deer, but not Like the Deer

Published: October 10, 2013 ~ 0

By Laura Edwards

A few minutes after 10 last night, Andrew picked me up for blindfolded run number 14.

We’re just over five weeks away from the Thunder Road Half Marathon on Saturday, Nov. 16, when I’ll run 13.1 miles blindfolded, in a real race with thousands of other people, guided only by Andrew’s instructions and my little sister’s courage.

My custom blindfolds arrived all the way from the U.K. earlier this week. I ordered two – a purple one for Thunder Road and a white one for our late-night training runs. On its maiden voyage, the white blindfold earned an A-plus compared to the ragged bandannas I’ve used to blind myself since early June, and I know its twin will serve me well on race day. I also practiced running with a water bottle in my right hand; I hold one end of a short bungee cord – my lifeline in a dark world – in my left. Andrew and I discussed the “problem” of water stops early on in our training and decided that the crush of people is just too dangerous, so I’ll carry my hydration with me.

Two times during last night’s run, we crossed paths with the curb that took my ankle the first time I ran blind, on the night of June 5. That night, I got cocky and tried to jump the curb mid-stride, even though I’d been a blind runner for all of 20 minutes. Last night, Andrew and I didn’t take any chances. Well before we reached it, we slowed to a walk and took a deliberate high-step over the offending obstacle. I’ll crawl the length of the race if that’s what I have to do, but I’d rather not.

We spent much of our 4.78-mile run traversing a side road outside our neighborhood (we ran in traffic, but there isn’t much late on a weeknight in our part of town). A huge herd of deer lives nearby, and at one point, Andrew told me he saw a few off in a clearing to our left. So at 10:30 last night, I was running with the deer. At a 9:47/mile clip, I wasn’t running like the deer, but that’s not the point, after all. For the first time ever, my main goal for a race won’t be to run it as fast as I can. I’d still like to get faster. I ran the Thunder Road Half Marathon in 1:57:20 last year, or an 8:58/mile average. With Andrew guiding me, in broad daylight, I think I can match that time blind.

But Taylor never cared about running fast. Taylor only cared about crossing the finish line. And now, fighting Batten disease with every ounce of strength and courage that could possibly be squeezed into one body and one soul, she can’t focus on being the best.

She can only hope to survive.

The Blindfold

Published: October 8, 2013 ~ 2

By Laura Edwards

It’s here – my custom blindfold! I’ve been training for the Thunder Road Half Marathon with a raggedy bandanna, but I thought running 13.1 miles blindfolded for Taylor and the fight against Batten disease called for something special. I ordered my blindfold in Taylor’s Tale purple from the U.K. (I love eBay). About four years ago, I scrawled the phrase “4Taylor” down my left arm in purple marker just minutes before leaving for one of the many races I’ve run in my little sister’s honor since she crossed the finish line of her first 5K, blind and battling for her life. I’ve never run a single race without doing it since. Often, when I come to a steep hill or hit a rough patch in a tough race, I’ll glance down at that phrase on my arm. Even if I’m wearing long sleeves, I know that it’s there. And thinking about Taylor’s courage in the face of the world’s worst disease gives me the extra push I need to dig into my deepest energy reserves. It works every time.

Now that you know exactly what to look for on race day, I hope you’ll join me out on the course if you’re able. Read on to find out how you can be part of the Taylor’s Tale team at Thunder Road or support the cause from afar.