Turn it Purple

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.

expo

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

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.

Believe

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! 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.


The Reason

By Laura Edwards

The Thunder Road Half Marathon is less than a week from today. When I closed my eyes and took my first steps as a blind runner on a middle school track on June 5, I only hoped that I would cross the finish line standing on Nov. 16. But now, with 15 blind runs under my belt, including a 10-mile run just seven minutes shy of my sighted personal record for that distance, I feel confident that Andrew and I will run a great race for Taylor and the millions of people fighting a rare disease.

With Thunder Road just days away, my attention has shifted away from training for the race to considering last-minute logistics, such as:

  • We have more than 40 people running for Taylor’s Tale, giving us one of the largest teams at Charlotte’s largest road race; somehow, we have to get purple Nike Dri-FIT shirts to our runners between Tuesday (when they come back from the printer) and Friday.
  • We’ve received local, statewide and even national media interest in our story; juggling interviews, especially for TV, with a full-time job can be like trying to put together a jigsaw puzzle with a couple of missing pieces.
  • The race begins and ends in uptown Charlotte; this morning, I squinted over my cup of decaf coffee at the parking map posted on the race website and tried to find the corner near the finish line where our cheer station will be located.

As much as I want our supporters to have convenient parking, I’m most concerned about my dad, who will be with Taylor on the morning of the race.  I’ve often dreamed about what I will do when Andrew and I cross that finish line. I can’t even begin to imagine how I will feel.

I called my first post about this race “Run to the Light.” After 13.1 miles in the dark on Saturday, I’ll take off my blindfold; I hope my little sister is the first person I see. But last night, for the first time, I grew concerned about finding parking close enough to the finish line that my sister can make it there.

In the five months since Andrew and I began training for Thunder Road, Taylor has slipped deeper into the dark chasm of Batten disease. She struggles to walk, even with a walker. She suffers from myoclonic jerks. Batten disease has silenced a once beautiful singing voice. I don’t remember the last time my sister talked to me. I wish I’d known it was the last time. I would have savored it, or recorded it, or made a note of the date.

Taylor's 5K finishFive years ago, my sister ran her own triumphant race at Thunder Road. She ran tethered by a bungee cord to a sighted guide, just as I will do on Nov. 16. She stumbled and fell a few times, but she pulled herself to her feet, brushed herself off and said she could keep going. And she RAN across that finish line.

But that was five years ago. I know a lot about Batten disease. I may have majored in English, but I can describe the science of Batten disease in cold, technical terms. And I know this to be true:

My sister is dying.

I talked with a writer at a national magazine for a possible story yesterday morning. She asked me if I believe that this run, or the efforts of Taylor’s Tale, can save my sister.

I believe in Dr. Steve Gray, who will run alongside Andrew and me on Saturday. I believe that Steve and the team at the UNC Gene Therapy Center can save the lives of kids like Taylor. But as much as I believe in Steve and a handful of other talented scientists around the world working on Batten disease, I don’t know the answer to that writer’s question.

horseback riding

I do know this, though:

There will ALWAYS be another Taylor if we do nothing. Children and families shouldn’t have to endure a tragic disease with no known cure. And I believe we WILL beat Batten disease.

For me, Taylor’s courage as a runner will always live on as a symbol of her never-give-up attitude in her fight against Batten disease. Blindness kicked her and knocked her down when she ran that 5K at Thunder Road in 2008, but she pulled herself up and kept going. I won’t give up in MY fight on behalf of people like her until the day we cross the ultimate finish line.

Taylor didn’t stop running until her body gave out on her…and neither will I.

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 by TONIGHT at 11:59 p.m. ET. On the second page of registration, under “Event Groups/Teams,” select “Taylor’s Tale” from the list under “Choose an Existing Group.” If you miss this online registration deadline, you can also 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.


Thunder Road: The Details

By Laura Edwards

blindfold WCNC storyI 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

By Laura Edwards

Endurance coverTwo 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!

Taylor and Laura after the Jingle Jog 5K in 2008I’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

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.

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! 


The Real Heroes

By Laura Edwards
Taylor's 5K finish

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. 

Helen Keller quote

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.

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! 


My Sister’s Legacy

By Laura Edwards

balloonsMy 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

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.

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! If you’d rather cheer, stay tuned for details about the official Taylor’s Tale cheer station on the course!