Turn it Purple

Published: November 15, 2013 ~ 0

By Laura Edwards

Thanks to a West Coast friend, Julie Siebel, and a Charlotte friend and father of two sons fighting Batten disease, Chris Hawkins, for this idea. My mom and I hope you’ll help us get it moving.

Chris will wear purple and run the 5K for Taylor’s Tale at Charlotte’s Thunder Road Marathon tomorrow, but while Julie won’t be able to run with Team Taylor’s Tale, she’ll also be wearing PURPLE in support of our efforts to bring awareness and funding to Batten disease and other rare diseases. Chris asked his friends to use social media to share photos of themselves dressed in PURPLE even if they couldn’t run or cheer at the race.

Thanks for the inspiration, Julie and Chris! I’m asking all of my readers to put on some PURPLE and share a photo with Taylor’s Tale via Facebook, Twitter or both tomorrow, Nov. 16. By turning Facebook and Twitter purple, you can help us support not only kids with Batten disease, but also 30 million Americans and 350 million people worldwide suffering from rare diseases. Then, go one step further. Ask YOUR friends to post a photo of themselves in PURPLE and share the reason behind it.

There are about 7,000 different types of rare diseases, with more being discovered each day. Ninety-five percent of them don’t have a single FDA-approved drug treatment.

We can do better. And it all starts with telling a good story.

That’s it from me until after the race. It’s go time.

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.

Click here for details about the official Taylor’s Tale cheer station at Thunder Road!

The Finish Line

Published: November 14, 2013 ~ 4

By Laura Edwards

In less than 36 hours, I’ll cross the finish line of Charlotte’s Thunder Road Half Marathon, completing the biggest road race of my life. I’ll take off my blindfold and let the light come pouring in.

We won’t have an answer for kids like Taylor by Saturday afternoon. But I hope that my run, and the runs of all 50-plus people who will put on a purple shirt for Team Taylor’s Tale at Thunder Road, will help us get closer to the finish line in the race that really matters.

Thanks to all those who will help us turn Thunder Road purple for Taylor on race day.

Thanks to all of our supporters who will rock the cheer station at the final stretch and give ALL runners the boost they need to get to the finish.

Thanks to Dr. Steve Gray for dedicating his life to finding treatments that could save people like my sister. He has the talent and the passion to lead us into the light.

Thanks to my guide, Andrew, who helped me find my way in the dark.

Thanks to my family, who always believed in me.

Thanks to my sister, whose bravery inspires me every moment of every day.

It IS possible to find beauty in the midst of a tragedy. Focus on what’s good, appreciate the support of others, work hard, keep your eye on the finish line, and never, EVER stop believing.

Join the Taylor’s Tale team and help us turn Thunder Road purple for Taylor! Online registration is closed, but you can still register at the race expo on Friday, Nov. 15. Wear purple and run for us to help raise awareness on race day. If you’d rather cheer, click here for details about the official Taylor’s Tale cheer station on the course! Contact me with any Thunder Road-related questions.

A Glimmer of Light

Published: October 3, 2013 ~ 0

By Laura Edwards

Under the watchful eye of the crescent moon and several stray clouds a few minutes after 10 last night, I pulled a worn bandanna over my eyes, took one end of a short bungee cord and took off with my sighted guide at my side for blind training run number 13.

Andrew set an easy pace for our four-mile run; we never averaged better than a 9:02 mile (of course, I saved my best for last; it doesn’t make sense because I’m a natural sprinter, but I get faster as I go). For the first time, we also played it safe on all of the ankle-breaking obstacles, walking over the decorative stamped concrete strips and speed bumps. With the Thunder Road Half Marathon just about six weeks away, we didn’t want to risk another ankle injury.

I can’t see shapes or colors through either of the “blindfolds” I’ve used for training, but at night, flashing traffic signals, bright headlights and even the light from some street lamps penetrate the thin fabric. Last night, I made out a street light about halfway through our run and figured out our location in relation to my house.

Batten disease is a degenerative disease. Everyone’s different, but what that means for Taylor is that she had all of her abilities and seemed healthy until about the first grade, and she didn’t have any physical problems until a year later, when she began to lose her night vision. She went blind over several years, losing first her night, then her central and finally her peripheral vision. I’ll never forget a moment outside a year-round Christmas shop on the South Carolina coast during a family vacation a few years after her diagnosis. When we walked by the shop, Taylor mentioned the “pretty Christmas lights,” stopping us all in our tracks. I don’t know if my sister ever saw the lights on her own Christmas tree again after that hot summer night at the beach. But when that glimmer of light darted into her shadowy world and brightened it, if only for a moment, it made my heart – if not my head – believe she had a very bright light waiting at the end of her twisted, dark tunnel.

“It made my heart – if not my head – believe she had a very bright light waiting at the end of her twisted, dark tunnel.”

My sister and I are not the same. I can still see flashing lights through thin fabric, and I can take off my makeshift blindfold whenever I want. Last week, I custom-ordered the thickest blindfold I could find; it should be here any day now. I’ll wear it at Thunder Road, because I want to run as my sister ran: in total darkness, with nothing but my guide and Taylor’s courage to lead me to the end. And when Andrew and I cross the finish line, I’ll rip off that blindfold, and I’ll take in the light with the two working eyes God gave me. Because I know tragedy, and it makes me want to fight that much harder to hold on to all the good that I have.

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 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!

A Blind 10K, and Some More for Good Measure

Published: September 28, 2013 ~ 4

By Laura Edwards

This morning, Andrew and I did the most normal thing in the world: we drove to an almost deserted office park south of our neighborhood and warmed up with a .82-mile jog at about a 9:00/mile pace. But that’s when we threw “normal” out the window: when Andrew handed me one end of a short bungee cord, and I pulled a purple blindfold down over my eyes, blocking out the brilliant sunlight in the cloudless sky. That’s when two runners – one sighted, one blind – stepped into the bike lane facing traffic and picked up the pace for a 6.5-mile run.

Blind run number 12 marked not only our longest run to date, but also our fastest. Over 6.5 miles, we averaged about an 8:30 mile and even briefly dipped into the sixes on some of the downhills (without taking a double face plant). I ran faster with the blindfold than without it, even at the end of the run.

With the exception of one large loop in an offshoot, we traversed the same road – a road with a gradual climb – several times and made a U-turn each time we reached the end (doing so allowed us to practice our double U-turn skills!). That gave me a very different sensation from all of the tight cul-de-sacs and speed bumps in our neighborhood. The road also included a bridge over Interstate 485, with a different surface from the pavement covering the rest of the road. The bridge felt like corrugated cardboard beneath the soles of my high-cushioned Brooks running shoes. We passed a few walkers, runners and cyclists. Andrew told me that once, we passed a woman wearing a purple shirt (purple is the color for Taylor’s Tale). Another time, he told me that a mother driving with her teenage son in the passenger seat slowed the car and pointed, urging her son to look at us (I smiled with my eyes beneath my blindfold when Andrew told me that). We – or at least I – had one scary moment when a driver came flying down the road in our lane. Without my vision, I had no concept of whether or not I was about to be hit by a car, and I instinctively jumped toward, and almost into, my sighted guide (and my stomach jumped into my throat). Andrew told me the car was about 10 feet from us, but the driver was speeding so quickly that I felt all of the car’s force in my bones. I wonder now if Andrew felt the same way, or if I felt it at a heightened level because I couldn’t see it coming.

My goal for the Thunder Road Half Marathon is to average at least a 9:00 mile. I ran faster than that in the race last year and think that with Andrew’s direction and Taylor’s courage to guide me, I can match that even without the gift of sight.

news 14 filming

p.s. Earlier, I called today’s outing blindfolded run #12, but I didn’t count this past Monday, when I donned the blindfold and ran with Andrew for a News 14 Carolina story that aired in Charlotte. You can watch it online here. More coverage is on the way, so stay tuned!

As a reminder, I’m doing this crazy thing not just so I can talk about it, but to help support our fight against Batten disease and to save people like Taylor. Read on to find out how you can support our efforts through my run as well as how you can join our team on race day. If you plan to run for our team, please send me a note ASAP (even if you won’t register ASAP) to help us plan. Thank you!

The Path Not Chosen

Published: September 18, 2013 ~ 4

By Laura Edwards

Charlotte’s Thunder Road Half Marathon is less than two months away. I could run a full marathon tomorrow, but I promised my little sister, and the rest of the free world, that I’d run the half marathon blindfolded. That’s right – blindfolded. I gave myself five months to learn to run in the dark, guided only by the feel of the road beneath my feet, verbal instructions from and occasional tension placed on a three-foot bungee cord by my sighted guide, Andrew Swistak.

Five months sounds like plenty of time to learn how to be blind, right?

When I woke up this morning, I’d run in my world of darkness a grand total of nine times. Andrew and I live pretty crazy lives, so it’s not always easy to get together, even for a 30-minute run.

So tonight, when my husband, John, said he’d pinch run for Andrew for a second time, I had my blindfold on before John could lace up his shoes.

My husband is talented at many things, and I admire and love him for taking a turn on the other end of that bungee cord – my lifeline on these runs. But he’s not an experienced runner like Andrew, and while Andrew’s only led me on eight blind runs, eight is a heck of a lot more than one. On top of that, my ankles are still wobbly, and I just put 60 miles on them in Grand Teton and Yellowstone National Parks.

So we took it slow – 11:33/mile over 2.07 miles, to be exact (almost three minutes per mile slower than my average pace for a half marathon). We had a few hiccups. We haven’t mastered our spacing or our tension on the cord or our timing for turns the way Andrew and I have mastered all of those things.

But I didn’t fall. I didn’t hurt my ankles. And when you have 20-20 vision with contact lenses and you promised the world you’d run a half marathon blind, 10 practice runs in a blindfold feels better than nine practice runs in a blindfold.

And my pinch runner and I might have been slow as a couple of snails on practice run number 10, but I like to look at the bright side of things. I got to spend time with my husband – time I wouldn’t have had with him otherwise; I didn’t hurt my ankles, whereas quickening my pace could have been dangerous; slowing down helped me experience sensory things, such as the feel of a divot in the pavement, a “hello” from a passing neighbor and a cool breeze on my skin, autumn whispering after the lingering summer heat died with the setting sun.

I woke up this morning hoping I could notch blindfolded run number 10 with Andrew, my sighted guide for the Thunder Road Half Marathon. After all, the more miles we log together, the better we’ll be together on race day.

But instead, I hit the streets with my pinch runner. And though it’s not the path I would have chosen, I made the best of my situation.

Race training schedule conflicts don’t come anywhere close to having a monster like Batten disease in your genes. But we can’t do anything to turn back time; to change what’s already encoded in Taylor’s cells. Though we cherish the memories of the days before the knowledge of Batten disease came crashing into our lives, we can’t look back. We can look at the photos that captured Taylor’s eyes when they could see; in my mind’s eye, I can see her running down the beach and crashing into the waves, her golden locks blowing in the breeze and her silent laughter filling my ears.

We can’t bring back the past, but we can change the future. We can change it for lots of Taylors.

Batten disease isn’t the path I would have chosen, not in a billion years. But I’ll make the best of this situation, even if my own life depends on it. I’ll keep running this race till the very end.

My Birthday Wish for Taylor

Published: August 18, 2013 ~ 3

By Laura Edwards

My sister, Taylor, will turn 15 on Monday. Taylor’s less than half my age, but she’s my hero. She’s done some pretty incredible things in her short life – like run two 5K races despite the fact that she’s blind and suffers from Batten disease, which is pretty much the worst disease on the face of the earth. That’s why, in three months, I’ll run Charlotte’s Thunder Road Half Marathon blindfolded to honor her and help find a treatment for Batten disease.

I’ve had the same birthday wish for Taylor every year since her diagnosis in 2006. I want a world where people like my sister can dream of growing old. I believe in that world. Tomorrow, in honor of my sister’s birthday, you can do one of three things to help Taylor’s Tale achieve that dream:

Sign up to run for Taylor at Thunder Road on Saturday, Nov. 16, and help us turn the course purple for Taylor’s Tale. You can run the marathon, half marathon or 5K. Note: blindfold not required. 🙂 Be sure to join our team during the registration process. 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 honor Taylor and help raise awareness of Batten disease on race day. In return, you’ll receive a moisture-wicking team shirt and an invitation to an optional post-race get-together. Stay tuned for more details! Click here to register now.

Make a gift to Taylor’s Tale in honor of Taylor’s birthday and help support our fight against Batten disease and other rare and genetic diseases. All donations are 100 percent tax-deductible. We fund research that has the potential to lead to treatments for human beings. We’ve supported work at top institutions in the United States and Europe. Today, we’re co-funding work at the University of North Carolina that could lead to life-saving gene therapy for Batten disease and many other genetic diseases. To make a donation, click here.

Run 3.1 miles – or a 5K – for Taylor on her birthday, Aug. 19. Visit our Facebook page and share a post about your run. Be creative – share a photo or a description of your run, or just tell us that you did it! You can also connect with us on Twitter. Share your run with us on Facebook and Twitter.

Thank you for helping us write the happy ending to Taylor’s Tale!

Carrying the Torch

Published: August 7, 2013 ~ 0

By Laura Edwards

I’m past the halfway point of the two-week rehab period prescribed by my sports medicine doctor, and I’m ready to get back on the road for Taylor. I don’t have any swelling in my sprained ankle, and the pain is much better this week than last. I’ve practiced the art of icing with a frozen cup of water; I kick off my shoes to do this at the office at least once a day, so I’m grateful for understanding coworkers. Barring any new setbacks, I should be back in a blindfold by sometime next week, just in time for the three-month countdown to Thunder Road.

Meanwhile, my mom’s carrying the torch for both of us. I thought I’d be able to publish a new post for each of her training sessions, but I’d never sleep. By my count, Mom’s made it to the track or the treadmill three times since her coach went down last week. She even went to Run For Your Life and bought new running shoes! Last night, I joined her at the Y near our house and lifted weights while she ran laps. Once, I crept to the corner of the stretching area with my phone and hid behind a weight machine until she came down the straightaway. I jumped out just in time to capture a photo of her. Mom didn’t stop, but the next time she came around, she tried to sneak a peek at my camera roll and get me to agree to approval rights.

Mom will be ready for Nov. 16, and so will I. You can join us and help save kids like Taylor. Just visit the Thunder Road website to sign up for the 5K, half marathon or marathon. If you run for the Taylor’s Tale team (available in the list of groups/teams), we’ll provide a moisture-wicking shirt and a fun post-race get-together. More details to come! In the meantime, please consider supporting our cause with a donation (see how below). All gifts are 100 percent tax-deductible and will support gene therapy at the University of North Carolina.

See you on the road…soon!

Someone has to Run for T

Published: July 30, 2013 ~ 2

By Laura Edwards

I run races year-round. Twenty years on the soccer field did a lot of damage, and I deal with injuries all the time. But on Nov. 16, I’ll run the most important race of my life, and I’m not taking any chances. Early that morning, I’ll pull a blindfold over my eyes and honor the five-year anniversary of my little sister’s first 5K at Charlotte’s Thunder Road Half Marathon. So this morning – the start of my third day with an obvious limp – I took my balky ankle to see my sports medicine doctor for an exam and X-rays.

The good news is that I don’t have any broken bones, and the weird stuff my doctor saw was already there on an X-ray from 2010 (which doesn’t say much for my long-term joint health but bodes well, I suppose, for THIS race). I went home with a prescription for two weeks’ off from weight-bearing activities, running included, and frequent icing.

I’m one of the world’s worst patients, because I can’t stand to sit still. But this time, I’ll listen. I’m on a mission, and I won’t do anything to threaten it.

After my appointment, I sent a message to my mom, who has never run a race of any distance but will run the Thunder Road 5K for Taylor’s Tale. I promised to coach her to her goal of running 3.1 miles this fall, and in my message, I offered to meet her at the indoor track tonight to lift weights and provide instruction from the sideline.

Nine minutes later, she responded:

“On the treadmill right now. Someone has to run for T!”

Mom on treadmill

What does a go-getter like my mom need with a gimpy coach like me, anyway? Sans instruction, Mom logged 30 minutes on the treadmill, alternating two minutes of walking with three minutes of running at 5.2 miles per hour. One week ago tonight, Mom ran for the first time; as she took her first strides, she told me she didn’t know if she could run 3.1 miles without stopping. When she hits the open road on race day and breathes in the clear, cool November air, she won’t remember saying those words.

Besides, she didn’t really mean them. Because she’s my mom. And my mom ALWAYS believes.

I believe, too. I believe in my mom; I believe that my ankle will heal; I believe in Taylor’s courage; I believe that we can achieve our dream.

You can join my mom, my sighted guide and me on the Taylor’s Tale team at the Thunder Road races on Nov. 16. Scroll down to learn how, and stay tuned for more details!

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.

Just the Beginning

Published: July 23, 2013 ~ 2

By Laura Edwards

My mom, Sharon King, has never run a race. But on Nov. 16, she’ll be in the 5K field when thousands of runners fill the streets of uptown Charlotte, NC for the Thunder Road Marathon, Half Marathon and 5K.

My mom can do anything she puts her mind to, whether or not she believes it. She doesn’t need my help. But I agreed to coach her to her first 3.1-mile finish and look forward to spending the next few months “on the road” together even as I work toward my own goal of running the half marathon blindfolded in my little sister’s honor.

Mom running

We hit the indoor track for our first training session tonight. I thought we’d average 12-minute-plus miles, but as soon as I hit the “start” button on my Garmin, Mom took off. I don’t like to do anything halfway, but I come by it honest.

We alternated 0.2-mile jogs with two-lap walks on the 1/12-mile track. Toward the end of our run, Mom picked up speed and sharpened her focus, and I fell back to snap a secret photo of her in stride.

We hung it up after a mile; I know the dangers of overdoing exercise as well as anyone and want to warm Mom’s joints up to the idea of this whole running thing. But while we didn’t break any distance records, we got off to a great start. My mom, the non-runner, averaged a 10:28 mile and would have gone faster had she not had me in her ear telling her to slow down on some laps.

I might be able to convince Mom to take it easy on the track, but in the real fight, there’s no room for that. Tomorrow is the seven-year anniversary of Taylor’s Batten disease diagnosis. We’re not slowing down any time soon, and we’ll never, ever give up for kids like my sister. I can’t tell you what the clock will say when we cross our respective finish lines on Nov. 16, but you can count on us to keep fighting.

The Thunder Road Marathon, Thunder Road Half Marathon and Thunder Road 5K have plenty of room for other Taylor’s Tale supporters. If you’re interested in running to honor Taylor and support Taylor’s Tale, the 501(c)3 non-profit organization we founded to fight Batten disease and other rare diseases, please contact us.