Loopy for a Cause

By Laura Edwards

If you read my blog at a regular clip, you know I’m a runner. I run because it feels good. I run because it’s good for me. I run for Taylor.

This Friday – Saturday (June 1-2) marks the second annual “Loopy for a Cause” on the Green in downtown Davidson, NC. The event, founded by Davidson resident and ultra marathon runner Jeff McGonnell, coincides with Batten Disease Awareness Weekend and raises money for the Batten Disease Support & Research Association (BDSRA). Last year, I saw Jeff circle the town Green for part of his 24-hour “loopy” run. Six weeks removed from an Achilles injury, I had to watch from a golf chair.

This year, I’m free from the orthopedic boot that blessed me with one of the world’s greatest tan lines last summer. So instead of watching from a golf chair, I’m scheduled to run with Jeff from 3-4 p.m. this Saturday, June 2. Last year, Jeff circled the Green 650 times, totaling almost 90 miles. I won’t come close to that, but I’m excited to join Jeff in his amazing efforts.

If you live in the Charlotte area, I hope you’ll come out for at least a portion of this great event! In case watching us circle the town Green isn’t entertaining enough to suit your taste, you’ll also have the opportunity to enjoy a movie on Friday evening – organizers will show “Ferris Bueller’s Day Off”  – and 10 hours of live music on Saturday.

You’ll also have the opportunity to donate to a great cause – the fight against Batten disease. This weekend’s event benefits the BDSRA. If you choose to donate, I’ll wear one of many costumes. You can pay to make me run in a big wig, flowered hat, cape, dress or even a cow outfit!

Once again, I’ll be running from 3 p.m. to 4 p.m. this Saturday, June 2. Come on out and join the fun (bring a chair and a camera)!

Jeff will kick things off at 6 p.m. on Friday and wrap up at 6 p.m. on Saturday (the live music will end at 8 p.m. that night). To learn more, click here.


Tater Tots and Camaros

By Laura Edwards

ourboys 10K 2012Congratulations to Chris Hawkins, the father of two boys fighting juvenile Batten disease, and Jeff McGonnell and Andy Brown, who helped Chris pull off his annual “ourboys” race north of Charlotte this morning in support of the Batten Disease Support & Research Association (BDSRA). I traveled to Harris Road Middle School in Concord to run the 10K, a new option this year in addition to the traditional ourboys 5K.

I broke just about every pre-race rule this time, gorging on tater tots (yum!) at a burger place last night, staying up past midnight and stealing precious minutes of sleep this morning, which meant I ate breakfast just an hour before the start of the race. I didn’t warm up, because catching up with friends at the start line (thanks for coming out, Jill and Matt!) was more fun.

In any case, I went home with a first place medal, winning the 30-34 age group with a time of 48:59 (7:54/mile pace) – good for a new PR for the 10K. I may need to make tater tots part of my pre-race ritual! 🙂

I rarely stick around for awards presentations, but I was one of the last to leave today after getting my medal. Before I walked to my car in the near-empty lot, I spent some time with Brandon and Jeremy Hawkins, the guests of honor.

At 6’2″, Brandon towers over me. He’s headed to high school this fall. When Chris and Wendy Hawkins first heard the words “Batten disease” in 2006, Brandon and Taylor shared the same neurologist. Doctors diagnosed just weeks apart.

Jeremy is a social butterfly; he kept people company while they signed a large photo of the boys or waited for their custom Braille bookmarks, which Brandon created on his Brailler. Jeremy will start middle school in August.

I’ve watched these kids grow up over the past six years; I’ve watched Batten disease steal bits and pieces of them, but I’ve also watched them find joy in the simple things, like their ride in a cherry-red Camaro along the 5K course this morning. Taylor has that gift, too.

To learn more about Brandon and Jeremy or the ourboys race founded in their honor, visit www.ourboysjourney.com.

Camaro


4 TAYLOR

By Laura Edwards

On Saturday, I ran the Tar Heel 10 Miler in Taylor’s honor for the third consecutive year.

I awoke to the sound of my iPhone alarm and my friend’s guest room clock playing a heinous duet – I’ve never been able to bring myself to trust a single alarm to do the job pre-dawn – before 5 a.m. I dressed by the light of a single lamp and inked my sister’s name in block letters on my left arm with a purple marker, packed for the occasion. I ate my traditional pre-race breakfast – a bagel with cream cheese and a fruit smoothie – in the dark, silent kitchen. I swung my Explorer’s headlights out onto Orange County’s rural roads before 6 and drove about 30 minutes from my friend’s home in Hillsborough, NC to a parking lot tucked beneath the watchful gaze of the Dean Smith Center and the Kenan-Flagler Business School on the campus of my alma mater, the University of North Carolina. I checked and re-checked my pack for my license, credit cards, health insurance card (it’s never a stretch to assume I’ll get injured), car keys and sport jelly beans. Satisfied, I began the 10-minute walk to Kenan Stadium to join 2,734 other runners for the 7:30 a.m. start, led by 2012 U.S. Marathon Olympic Trials champion Meb Keflezighi.

When the gun sounded, I inched my way around the stadium track amidst the crush of bodies. As soon as I reached the tunnel leading out of the stadium, I took off.

Around mile three, I got awful cramps (I never get cramps after three miles). The course seemed hillier than usual. I wondered if the other runners nearby could hear my breathing. But I kept going.

Over the first five miles, I recorded a 7:50/mile pace. I knew that if I kept it up, I’d smash my personal record (PR) for 10 miles – 1:25:27, recorded in the 2011 Tar Heel 10 Miler – and my previous 10-mile race time – 1:26:10, recorded in the Charlotte 10 Miler in February of this year. And oddly – though physiologically I’m better suited to sprinting – I tend to finish distance races much more strongly than I start them.

Around mile seven, things got a little uglier. My bum ankle (sprained about six weeks earlier and never fully healed) complained. My hamstrings and quads screamed. My lungs burned. I cursed myself for not getting more sleep (I didn’t turn out the lights till after 1 a.m.). And the notorious Laurel Hill – a 0.8 mile climb near the very end of the course that is so punishing, it gets its own separate timing mats at the bottom and top (because scaling Laurel Hill quickly warrants serious bragging rights) – still loomed.

When the first Laurel Hill timing mat came into my field of view, I think I audibly groaned. I wanted to walk. Normally I can run 10 miles (and farther) non-stop without any issues, but I’d really pushed myself for the first eight-odd miles of the race, and I could feel the effects.

At that very moment, I glanced down at my feet; as my eyes traveled downward, I happened to see the message inked on my arm: “4 TAYLOR.”

I churned my legs and arms up that hill. I ran it a good bit more slowly than last year, but I MADE IT. And soon enough, mile marker nine came into view. The end was near! I experienced a wave of emotion at that moment – relief that my exhausted body would soon have water and a cool metal stadium bench, and disappointment that my favorite race in the whole world – and the high I get from running for a cause in which I so deeply believe and for a little girl I love so much, would soon come to an end.

I ran the final mile in 6:28 – my fastest of the entire race.

When I approached Kenan Stadium, I slowed long enough to stuff my sport beans safely into my pack and remove my hat so I wouldn’t lose either during my customary dash to the finish line. As I burst through the tunnel and into the sunlight that soaked the stadium, I broke into a full-on sprint. All of the pain in my muscles was gone, and I was no longer tired. At that very moment, I felt as though I could run another 100 miles.

One hour, 25 minutes and 34 seconds after crossing the start line, I crossed the finish line. I missed my PR by a mere seven seconds – amazing considering the length of the race. I briefly regretted the precious wasted seconds outside the tunnel just before the end of the race, when I slowed to take off my hat and put my sport beans back in my pack.

And then, just as quickly, I dismissed the thought.

I finished 722nd out of 2,735 overall (men and women), putting me in the top 26 percent of the field. Yes – I came agonizingly close to setting a new PR – but I had a fantastic time missing it, raised awareness of Batten disease and honored my little sister, who once told me she dreamed of walking that campus as a student someday.

God built me like a sprinter, but the fight against Batten disease is a long and difficult race. Outside of my finish line dashes, I’ll never stand out in a distance race field, but if my times show anything at all, they show I’m consistent. And I’ll never, ever stop fighting this fight. I’m in it for the long haul, no matter how many Laurel Hills we face.

To honor Taylor and support the fight against Batten disease, I’ll make a donation to Taylor’s Tale’s Miles to a Miracle campaign. Please consider making a gift, too! Click here to visit my page; scroll to the ‘Support My Cause’ section at the bottom to donate. Thank you for your support!

Tar Heel 10 Miler 2012 stadium finish


2012 Tar Heel 10 Miler

By Laura Edwards

In two weeks, I’ll run for Taylor in my favorite race of the year, the Tar Heel 10 Miler. The course meanders through the streets of Chapel Hill, NC, and the campus of the University of North Carolina, my alma mater.

I graduated from college nearly eight years ago. Often, I feel as though the time I spent in Chapel Hill happened in another life. So much has transpired since then. And yet, some moments seem frozen in time.

I felt particularly homesick one day during the fall of my freshman year when I received a message from my mom’s email account. “Dear Rar Rar,” it read. “I wanted to send you a message, too. Here goes!” (insert several lines of  unintelligible gibberish here) “Love, T.” 

I printed that email and posted it on the cork board that hung on the wall over my desk in my dorm room. Every time I moved throughout my college career, the cork board came down and went into a cardboard box and onto the next temporary dwelling. The piece of paper with T’s email survived all of the moves, including the final journey home to Charlotte after graduation. I still have it today.

I used to imagine that my little sister might someday follow me to Chapel Hill – or wherever her dreams led her. Now, I hope that Batten disease does not steal her from us before she reaches the age when kids typically head to college, their entire lives still ahead of them.

Last year, I ran the Tar Heel 10 Miler in 1:25:27 – my personal best for a 10-mile race (I came close to matching it in the Charlotte 10 Miler in February with a time of 1:26:10). I’ve been hobbled by a sprained ankle for the past month, but I still hope to post a strong result on the 21st.

Once again, I’m running in honor of Taylor’s valiant fight against Batten disease. I’ll make a donation to Taylor’s Tale after the race, and and I’m also asking friends to give anything they can in support of my run. I’ll post my results here on Sunday, April 22.

To make a gift to Taylor’s Tale on behalf of my race, visit my fundraising page here, scroll to the Support My Cause section near the bottom of the page and enter your donation amount in the space provided. All gifts are 100 percent tax-deductible.  Thank you for your support!


No Dead Ends

By Laura Edwards

Laura pre-raceYesterday morning, I awoke to the sound of my alarm at 4:45, swung my legs to the side of the bed and braced for a shot of late February as my bare feet hit the hardwood floor in the silent, dark room. Ordinarily, I can’t bear the thought of rising before dawn. But I stood and walked to the kitchen without hitting the snooze button even once. I had a race to run for Taylor.

My husband, God love him, doesn’t understand this crazy race stuff but still dragged himself out of bed early enough to head to the race site with me and play on his iPhone in the relative warmth of his car for 70-some minutes while he waited for texted-in-stride instructions at mile marker nine to get to the finish line.

A few minutes after 7:30, I lined up with 333 other brave souls for the start of the first-ever Charlotte 10 Miler. I run the Tar Heel 10 Miler in Chapel Hill, NC on the campus of my alma mater every April, love it and couldn’t believe my luck when I learned that my hometown had gotten its own version of the wonderful but rare distance and – better yet – had chosen to put it almost in my own backyard.

At 7:55, the horn sounded.

Last year, I set a personal record (PR) for the 10-mile distance when I ran the Tar Heel 10 Miler in 1:24:00, finishing in the top 20 percent of the field.

Five days later, I injured my left Achilles tendon in a soccer game. I spent the next three months in a boot. Since then, I’ve run a grand total of one race – a 10K in the rural NC mountains last weekend. I missed last November’s Thunder Road Half Marathon for the first time in several years. Needless to say, I had no clue how I’d do in the Charlotte 10 Miler. And though the field was small, it was strong. My non-runner husband’s first words when we arrived were, “These people look serious.” So when I took off at the sound of the horn and let the cold air fill my lungs, I told myself I just wanted to run a respectable race in my little sister’s honor.

When I passed the first mile marker, the app on my phone announced my current pace – 8:35 per mile. I knew that put me close to my 2011 Tar Heel 10 Miler time (when I averaged 8:24 per mile) but didn’t think I could keep it up.

But even after I reached the halfway point, my pace held steady.

Around mile marker eight, the course cut through a neighborhood, rounded a bend and presented my fellow runners and me with the second-steepest hill I’ve ever encountered in a race (the steepest being Laurel Hill – a monster near the end of the Tar Heel race so notorious that it gets its own separate timing mats). And right then, my legs voted unanimously – without consulting me – to quit. Every muscle from my feet to my waist burned right down to my bones.

I thought about walking to the top of the hill. What harm could it do? With such a small field, I didn’t have to worry about the psychological tear-down effect of watching scads of runners pass me while I caught my second wind.

And then, just as quickly as the thought had entered my mind, it dissolved. In its place I saw a timeless image of my sister in her first 5K; falling, scraping her knees and palms; being given a chance to walk; gracefully turning it down; getting to her feet and finishing the race; running – not walking – across the finish line.

I ran up that hill, using my arms to propel my body when my legs refused. When I got to the top, I found my second wind. As I caught my breath, I sent my husband the promised text – “Get to the finish line!” – stowed my phone and picked up speed.

finish line

Taylor can’t run 5Ks anymore. But she is with me for every race I run. Never is that more apparent than when my body begins to fail me. I maintained a steady pace the entire race – except for the final mile. I ran mile 10 a full minute faster than any of the previous nine miles. I crossed the finish line at 1:26:10; I averaged an 8:37/mile pace, fell just two minutes short of my 2011 PR and beat half the field.

After the race, other runners talked about the hill that almost claimed me. Many thought it warranted a name, like the famed Laurel Hill. One runner suggested “Dead-endhaven Hill” (after a nearby street, Endhaven Lane).

My next race is seven weeks away, but my race to save children like Taylor from Batten disease never stops. The latter makes the Charlotte 10 Miler – even with a field chock-full of “serious runners” (in the words of my husband) – look like a walk in the park. But I know that I have to keep going – even on the days when the hills seem like insurmountable mountains.

Batten disease comes with a lot of pain. Our fight with this monster is far from easy. There will be many difficult days. But there are no dead ends.


Charlotte 10 Miler for Taylor’s Tale

By Laura Edwards

The Charlotte 10 Miler, my hometown’s only 10-mile foot race, is less than three weeks away. On Saturday, Feb. 25, I’ll join a small field for an early-morning start and run the race in honor of my little sister, Taylor.

The course, a combination of green way paths and suburban roads, has plenty of room for more Taylor’s Tale runners. And if you’re not up for the long race, you can suit up for a four-mile version. However, if you can’t stand the thought of running – especially on a Saturday morning in February – you can grab a coffee or hot chocolate, wrap up in a blanket in a lawn chair on the sidelines and cheer.

No matter how you decide to spend race day, I hope you’ll consider making a gift to our Miles to a Miracle campaign in support of my run, your run or a friend’s run. Your (100 percent tax-deductible) gift will go to a great cause – Batten disease research.

To make a donation to my Miles to a Miracle campaign, click here, scroll to the bottom of the page (where it says “Support My Cause”) and enter your donation amount in the space provided. If you plan to run, you can also set up your own campaign. Doing so is easy; to find out how, contact us!

While I can’t promise I’ll run the fastest on February 25, I can promise you this: I’ll run the hardest – for these 10 miles and for as long as it takes until we have answers for children like Taylor.


Run for Taylor on February 25!

By Laura Edwards

If you live within a reasonable distance of Charlotte (or if you don’t but like to travel!), you’re invited to join me for my hometown’s only 10-mile race on Saturday, February 25. I’ll bundle up in purple, the color of Taylor’s Tale, and run in honor of my little sister on what will be a chilly morning. The 10-mile distance is my favorite – I run the Tar Heel 10 Miler in Chapel Hill, NC each April – but it’s rare, so I was ecstatic when I heard about the Charlotte 10 Miler.

If the thought of running 10 miles sounds miserable to you, don’t worry – the event will also feature a four-mile run. The four-miler will start at 7:30, about 10 to 15 minutes prior to the headliner. Both races will begin by Urban Active in Ballantyne and follow south Charlotte’s McMullen Greenway to Four Mile Creek along gorgeous paved trails; they’ll end at the Earthfare on N. Community House Road. So if you’re not a runner, at least you know where to cheer! 🙂

The Charlotte 10 Miler officially benefits the Crohn’s & Colitis Foundation’s Team Challenge and the American Cancer Society. You can add a third cause, Taylor’s Tale and the lives of children fighting Batten disease, to the list by joining me on race day. All in all, there are plenty of reasons to run on February 25:

  • Support three amazing causes
  • Running is great exercise
  • Receive a free t-shirt if you register by Feb. 18 (everyone loves free t-shirts, right?)
  • Hang out with me 🙂

To learn more about the race (and register), click here. To learn more about running for Taylor’s Tale, contact us. I hope to see you on race day!


The Search for the Invisible Finish Line

By Laura Edwards

My Charlotte elementary school held an annual field day competition – for me, the highlight of the year. Back then, I spent many recess periods reading novels in the shade of the old campus’ stately oaks, too introverted to insert myself in the hopscotch and foursquare games and friendship bracelet-making parties of the other girls. But when field day rolled around, I showed up in Umbros and a t-shirt, handed my thick glasses to my teacher and smoked all of my classmates in the fifty-yard dash.

Charlotte Soccer Club gameThroughout my soccer career, I wasn’t always the most talented player on the field, but I was almost always the fastest. As a right midfielder, I loved to sprint down the sideline with the ball at my feet, beat the defense to the corner flag, wait for my teammates to catch up and curl a cross back to the top of the box for a shot on goal. I never led my team in goals scored, but I often led it in assists. During the spring of my senior year, my high school coach moved me to defense; prior to each game, he instructed me to mark the opposing team’s fastest player.

My best friend on my high school and club soccer teams could juggle the ball till the sun went down; I couldn’t juggle the ball for more than five seconds. But I had a killer cross, could throw the ball farther than most of the men’s team, and could outrun the whole conference. If I’d run track, I’d have specialized in the 400. And on the soccer field, I made my living as an athlete.

Nearly 20 years after I took home my first blue ribbon for the 50-yard dash and 14 years after I first stepped onto a sweet-smelling, freshly mowed soccer field, I learned that my little sister likely wouldn’t have the opportunity to chase her own dreams. After her Batten disease diagnosis, Taylor ran two 5Ks. But she last crossed a finish line in May 2009. And today, that singular moment feels as if it happened in another lifetime, to another family.

When doctors discovered the fatal flaw in Taylor’s genetic makeup, I ran to escape it. When adrenaline coursed through my veins, I felt unbeatable. Rather than turn to alcohol or drugs in an attempt to blur the sharp edges of my family’s tragic turn, I became addicted to running.

But Batten disease didn’t tire easily, and it became clear that we had a long fight on our hands. One morning, in a moment of perfect clarity, I realized that I wouldn’t find salvation at the end of a 50-yard sprint. So I did the only things I knew to do. I gathered all of my stamina. And I reinvented myself as a distance runner.

After passing the 13th mile marker during my first half marathon, I wanted to quit. My lungs burned. A fire raged in the soles of my shoes. A soccer player accustomed to sharing a field with 21 others, I discovered at that moment that running can be a very lonely sport – if you let it. But then, I rounded a corner and came upon a gray-haired lady sitting in a lawn chair on the side of the road. As I approached her, her eyes met mine. A look of understanding crossed her face; at that moment, I believe she understood me better than I understood myself. She smiled, put her hands together, and yelled, to me and only to me, “You can do it!”

finish line

I probably overtook 100 people in that final .1 mile, sprinting at full speed through a tunnel of spectators under a clear winter palette dotted with the skyscrapers of uptown Charlotte.

About five months later, I entered a spring race held among the blooming dogwoods and azaleas on the campus of my alma mater; in just under 90 minutes, I jogged through the tunnel and onto the oval circling the field at Kenan Stadium, where my legs found new life and carried me past almost everyone and across the finish line of the Tar Heel 10 Miler.

The races have gotten a lot easier since I christened my long-distance career. Despite a sore Achilles, I finished in the top one-fifth of the field in the Tar Heel 10 Miler this past April. A couple of weeks ago, I went out and ran 13.1 on a beautiful Saturday afternoon – just because I felt like it. But our battle with Batten disease – our search for the invisible finish line – has gotten more difficult with each passing year. Sitting here now, writing these words on New Year’s Day, I know that 2012 will be, without question, the toughest test yet.

I also know, from experience, that it is indeed possible to accelerate when, moments before, you thought you had nothing left to give. And I know that no matter how painful or exhausting it may be, I must be faster in 2012 than I have ever been before.

Yesterday, I ran 10 miles in my last personal physical challenge of 2011. My time for the first mile? 10:01. For the tenth mile? 7:24.


Run Toward the Light

By Laura Edwards
I have a confession to make: saving my sister will not be easy. This is not a new revelation on my part. In fact, no one in our family ever claimed that our mission to save children like Taylor would be a piece of cake. Some days (many, in fact), we search for the answers in a pitch-black world, with seemingly no hope to light our way. But we must never stop searching. We must continue this journey – if not by sight, then by faith.

Sometimes, I let several weeks pass between blog posts. If I’m not writing, I’m searching. Searching for what? God only knows. Hope? Salvation? Happiness? Eventually, I find my words. Often, they drift toward running.

I cannot run at the moment. I tore my Achilles playing soccer three weeks ago – the culmination of a less severe injury that originally occurred two days before I ran a 10-mile road race in Taylor’s honor. So I run in my mind – on cool, damp sand by the sea as the sun sinks behind a low cloud, or a field of wildflowers in a high mountain meadow – but never the unforgiving pavement.

Charlotte Benson, the mother of a child with Batten disease, is not a runner. But Charlotte understands the difference between a sprint and a test of endurance. She understands that our shared battle is a test of the latter. She knows that often in our long race to defeat this monster, we must run in the dark. 

I am injured, and Charlotte is not a runner. We have never met. And yet, we are running together – through the deepest, blackest darkness that is Batten disease, buoyed by our faith and the incredible gift of each other and the sick children we love.

Thank you, Charlotte, for your beautiful words. On their wings, I’ll run toward the light for another day.

Run to the Sun, by Charlotte Benson

A year ago, Lance Thompson, our good friend and avid runner, came to us with an idea to organize a 100-mile overnight relay run to raise money for the Foundation. Admittedly, I’m not a runner, and my first reaction was, “Who in the world is going to want to do that?!!” But as the idea evolved, and he shared his vision of a race whose course would meander under the starlit sky of the Texas countryside and culminate at a stunning destination at sunrise, I began to understand. Now, less than two weeks away, that vision will become a reality on May 14 when 30 teams of eight people each will compete by running a rugged Hill Country 96-mile course starting at Mount Bonnell and ending in the dawn light at Enchanted Rock. Members of each team will follow the route together in a van to support their runner and cheer him on as he steps onto the course alone to face his own unique challenge in the dark. Lance wanted the participants to experience first-hand the physical darkness and challenges that a child who is blinded by Batten Disease faces. It has been transformative to watch Lance’s ambitious dream become a reality and I am struck by how incredibly this race also mirrors our own life, and so perfectly mimics the mission of the Beyond Batten Disease Foundation. I love the way God inspires us only later to reveal His full intention.

As parents of a child with a terminal illness, there are so many unanswered questions. This not only is a race against time to find a treatment or a cure for our own daughter, but it’s a journey through the dark, facing the fear of running alone, and not knowing what obstacles and challenges lie ahead. The verse that continually comes to mind and is such a great source of comfort is 2 Corinthians 5:7, “For we walk by faith, not by sight.”

Our foundation was built by our family, our friends, and our community, all of whom have shared their talents, their gifts and their resolve to achieve the same goal. We have set out to accomplish something that has never been done before……..to eradicate Batten Disease and 600 other rare diseases through our carrier screening test. It’s a journey where friends and community follow us closely and offer support and encouragement. It’s a journey where everyone brings their talent and strength and sews them together to form an unbreakable bond: a resolve to commit, to endure, and to finish what we’ve set out to do.

This race is not a sprint. It is an endurance event that requires the commitment and support of a team. There is an African proverb that says, “If you want to go fast, go alone. If you want to go far, go with others.” God has provided for us with the incredible gift of our community, our “team,” which perseveres. These runners do not face the challenge of this course alone; our foundation does not face the challenge of Batten Disease alone. We are a team.

And best of all, we have charted a course. We are not simply running in the dark, aimlessly wandering from hopelessness, to fear, and despair; we are running to the sun, to the light, to the hope, to the dawn of a new day where Batten Disease no longer exists: our own Enchanted Rock. For light emerges from the darkness and morning is born from the womb of night.

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