2013: The Memories

Published: December 29, 2013 ~ 2

By Laura Edwards

As the sun sets on 2013, our seventh full year fighting the war against Batten disease, I know in my heart that in many ways, the story has just begun.

On Jan. 4, we remembered my Grandma Kathryn, an angel in life who earned her wings on Christmas Day 2012. My grandmother, who loved her grandchildren more than she loved her own life, urged us to fight the demon from the moment we got Taylor’s diagnosis in the summer of 2006. She had no way of knowing that she, too, had a tragic neurodegenerative disease lurking inside of her. There was nothing she wanted more than an answer for the disease that dared to steal her granddaughter’s life. I fight for Taylor, but I fight for Grandma Kathryn, too.

On Feb. 28, World Rare Disease Day, Taylor’s Tale announced that we had joined an international coalition to fund gene therapy research at the University of North Carolina. Dr. Steve Gray and his mentor, Dr. Jude Samulski, are not the only talented scientists working on Batten disease. But I believe in them because of 1) what I’ve learned about the science of Batten disease in seven-plus years, 2) what I’ve been told by their respected peers and 3) something in my heart that I can’t describe. And I believe in my heart that if we can continue to fund this project, we’ll have a clinical trial for kids like Taylor in a few short years.

For the fifth consecutive year, music students and teachers held a playathon for Taylor’s Tale in Raleigh, N.C. Their efforts raised thousands of dollars and a great deal of awareness for our fight against Batten disease. I love these kids and their teachers. This event is special.

In April, Taylor’s former classmates at The Fletcher School held their second cardio craze fundraiser with local celebrity Andre Hairston. They turned a school gym into a sea of love and hope.

On June 1, I announced my plan to run the Thunder Road Half Marathon blindfolded to honor Taylor and support the fight against rare diseases.

Eleven days later, Mom spoke at the National Institutes of Health (NIH) on behalf of Hannah’s Hope Fund. Mom and Lori Sames, founder of Hannah’s Hope, delivered amazing speeches, and Hannah’s Hope gained approval from the Recombinant DNA Advisory Committee (RAC) in its quest to begin a human clinical trial for another childhood neurodegenerative disease called GAN.

This year, Taylor’s Tale also welcomed new board members. Our first- and second-year board members have made an incredible impact on our fight against rare diseases in 2013.

During the five and a half months that I trained to run 13.1 miles blindfolded, I learned more about my sister’s dark world, and myself, than I could have ever imagined. And race day, Nov. 16, is an experience I’ll never forget. No words of mine can describe what happened at the Thunder Road Half Marathon for the fight against rare diseases.

In many ways, 2013 has been the most successful year for Taylor’s Tale since my mom and I founded it with a small but determined group of volunteers in a Charlotte living room seven years ago. We connected with members of Congress and developed contacts with other key individuals. We partnered with a leading patient advocacy organization called the Global Genes Project and were adopted by a wonderful, local philanthropic organization called Playing for Others. We’ve raised more money in other years, but we’ve never extended our reach in such a big way, or had this much excitement surrounding a funded project, or harnessed the power of a great story the way we did with the run…until now.

But while 2013 has been an incredible year for Taylor’s Tale, it has been a difficult year for Taylor in every way. When we founded Taylor’s Tale, my sister was an animated, spunky, running, playing, talking, singing 8-year-old with most of her vision. But Batten disease is a demon. Taylor has a beautiful singing voice, but she can no longer talk. Her two 5K finishes inspired my blindfolded half marathon, but she can no longer walk without assistance, and her wheelchair is on order. My sister taught herself to read before kindergarten and learned Braille after she went blind, but she can’t read or write anymore. My sister can’t use a fork and spoon, because Batten disease stole her fine motor coordination. I can see the sadness in her eyes, even though her eyes can’t see me.

Batten disease has won every battle.

But it will NOT win this war.

The Greatest Race

Published: December 22, 2013 ~ 0

By Laura Edwards

Thanks to my friends at Run For Your Life, who hooked me up with a free pair of purple Saucony Triumphs and some other swag for putting together one of the biggest – and most awesome – teams at Charlotte’s Thunder Road Marathon. I also snagged a pair of limited edition, stereo-Bluetooth earphones from yurbuds.

running gear

I don’t think anyone’s ever made a shoe quite like the Brooks Glycerin (the only shoe I’ve worn in a race for three-plus years), but I’m willing to branch out in the name of purple and variety. And the earphones are just cool.

I’m already filling my race calendar for the coming year, and though I’ll never be able to match the epic journey of my blindfolded run for my sister at last month’s Thunder Road Half Marathon, I couldn’t be more excited about running for Taylor and the fight against rare diseases in 2014.

Less than a week after I kick off my sixth year of running for Taylor with the Charlotte 10 Miler, Taylor’s Tale and other organizations from more than 70 countries will recognize Rare Disease Day. On Feb. 28, 2014, the seventh annual Rare Disease Day will provide a platform for patients, patient representatives and others to raise awareness about rare diseases and the huge impact they have on patients’ lives. Since its founding in 2008, Rare Disease Day has contributed to the development of national plans and policies in many countries, including the United States. Last year, Taylor’s Tale sent two board members, including my mom, Sharon King, to Washington to attend sessions, visit with legislators and advocate on behalf of the 30 million Americans who suffer from a rare disease.

As my mom and her travel buddy, Debbie Carney, forged relationships with key decision makers and gained valuable knowledge, the rest of the Taylor’s Tale team joined with Dr. Steve Gray of the UNC Gene Therapy Center to announce co-funding for a two-year research project that, if successful, could lead to a clinical trial for children with two forms of Batten disease. Ten months later, Dr. Gray’s work is on track, and our team is focused on securing additional funding to help move the project past the first two years and toward our goal of a treatment.

My husband and I are hosting Christmas this week. This weekend, we did some December “spring cleaning” to get our house in shape for the holidays. I pulled all of my race medals down from the plastic hook on the office closet door, where I’d thrown them up in a haphazard fashion. I counted seven from 2013:

As I spread them out on the carpet, I relived each race, from a rain-soaked Charlotte 10 Miler in February to a rain-soaked Huntersville Half Marathon last weekend. I realized I set a new personal record (PR) in every race except the one I ran blindfolded. And I felt Taylor’s absence at every single one. As I sat alone on the floor and ran my fingertips over those medals, feeling the raised details of each one as a blind person would, I thought about how much my sister has declined this year.

I got faster in 2013 – a lot faster. I owe it to a good friend who ran my first race with me and helped me – a born sprinter broken by soccer – believe I could be a distance runner; to the shoes that were made for my balky ankles and feet; and to the doctor who convinced me that lower mileage and cross training might actually make me better on race day. But more than anything, I owe it to my sister, who gives me wings when my lungs burn and my body wants to quit. More than anyone else, my sister, who can no longer walk without assistance, taught me how to fly.

I have big plans for 2014, both on and off the race course. I intend to keep setting PRs. But at the end of the day, my medals are just worthless chunks of metal.

Dr. Gray and others are racing to save kids like Taylor and the millions of people fighting a rare disease.

Theirs is the greatest race of all.

The Magic Tutu

Published: December 15, 2013 ~ 2

By Laura Edwards

I don’t normally run long races back-to-back, and after pouring all of my physical and emotional energy into running Charlotte’s Thunder Road Half Marathon blindfolded for the fight against Batten disease on Nov. 16, I planned on taking some time off before starting my 2014 race calendar with a 10-miler in February. But a couple of months ago, I won a free entry to the Huntersville Half Marathon from Théoden Janes, the Charlotte Observer’s pop culture writer. The race takes place just four weeks after Thunder Road, but when I won the entry, I thought, why not? It’d be a nice cool-down; a no-pressure way to end a great year for running.

I took the no-pressure attitude to the extreme. I dropped my training mileage to the bare minimum (12 miles/week). I never looked at the course map; I didn’t know a thing about the grade/elevation, turns or, well, anything. I ate junk food the week of the race. I stayed out late for a company Christmas party on Thursday night and got less than five hours of sleep on Friday night.

And then there was the tutu.

When I approached the Taylor’s Tale cheer station located at the final turn on the Thunder Road course with my sighted guide and the gene therapy expert from UNC in November, I heard the whoops and screams of about 100 cheerleaders, including 70-plus teenagers from Playing from Others, an incredible organization that is supporting Taylor’s Tale this year. After crossing the finish line a short time later, I learned that those teens, in a spontaneous, joint burst of inspiration, took off after us in their purple tutus, t-shirts, sparkle and glitter to surround us in the finish area, like a scene from a Disney movie.

When I had lunch with some of our friends from Playing for Others a couple of weeks ago, one of them, Madison Lynch, still had her tutu in her car. In a moment of enthusiasm/insanity, I promised them all I’d wear the tutu in the Huntersville Half Marathon for Taylor.

And then there was the rain.

I watched the forecast all this past week, and it only got worse. By Friday, the forecast looked ominous: 40 degrees at the start of the race, with a 100 percent chance of rain. I told one of my friends at the office that I’d probably look – and feel – like a drowned ostrich in that tutu.

But I don’t go back on my word. So at 6:30 yesterday morning, I put on my Coldgear tights and top-of-the-line Feetures socks, a base layer shirt and Team Taylor’s Tale shirt, the 4TAYLOR sleeves given to me by my sighted guide and his wife, and a hat to keep the rain out of my eyes. Last of all, I laced up the Brooks shoes that are overdue to be replaced yet carried me to the greatest sports moment of my life at Thunder Road four weeks earlier, and pushed them through a purple tutu that is most definitely not moisture-wicking, water-repellent or aerodynamic.

That tutu wasn’t designed for running, but it was a rock star at building awareness for Batten disease. During the race, I lost count of all of the water station volunteers and spectators who yelled, “Love the tutu!” or something similar when I ran by them. “Visit taylorstale.org to learn why I’m wearing it!” I yelled back. One mother watching the race with her daughter actually nodded and started typing something into her phone almost instantaneously. It felt good to imagine – to hope – she went to our site.

Most of the course snaked through neighborhoods decorated for Christmas, a change from the Thunder Road course that starts and finishes in center city Charlotte. It drizzled for most of the 13.1 miles, and for a short period, the rain poured from the front brim of my hat. But my legs felt strong, and I powered through the rolling hills. I got an extra burst of energy when I passed the 1:50 pace group and realized I didn’t feel winded at all (my personal record, or PR, for the half was 1:57).

Even with the rain, the end came too quickly. When I approached the 13-mile marker, I kicked it into high gear for my customary sprint to the finish line. I wish someone had a video of me sprinting to the finish in that tutu! And when I ran across the timing mats, the clock read 1:47:30:73. I’d beaten my previous PR by 10 minutes. In the rain. On junk food. On no sleep. On a course I didn’t know anything about. In a tutu.

I didn’t think the tutu would survive the day, but it’s not going anywhere. It will forever be known as the magic tutu. Because I’m one of those people who refuses to throw away the shoes that carried me to a great finish, even if I can stick my fingers through the soles.

I don’t know if it’s really a magic tutu. But I do know this: every time my muscles scream and my lungs burn, every time I want to walk to the top of a hill, I think about my sister; I think about how she ran the Thunder Road 5K from start to finish, and I think about how she faces the world’s worst disease with courage and grace. I think about those things, and the pain in my legs melts away, and my lungs fill with air, and I feel as if I could sprint to the top of the world’s steepest hill.

I know that yesterday, I ran a half marathon 44 minutes faster than I ran my first half marathon in 2009, and that I’ve gotten faster each year. I also know that as I’ve gotten faster on the wings of my sister’s courage, my sister has gotten sicker. I know that I will never, ever stop running for her. I know that I must never stop fighting until we cross the ultimate finish line for kids like Taylor.

Running for Taylor: Guest Post for Deb Runs

Published: December 11, 2013 ~ 2

By Laura Edwards

In August, I connected with Debbie at Deb Runs. A wife, mom, runner and personal trainer, she leads a running group called the Cruisers. Her posts are entertaining and inspiring! If you have a chance, please check out Debbie’s blog.

My sister’s story had an impact on Debbie, and she wrote about our journey on her blog after going on a 6.2-mile run in honor of Taylor’s 15th birthday. She followed my training for the Thunder Road Half Marathon, and earlier this fall, she asked if I’d be interested in writing a guest post for her blog after the race. Of course, I said yes! Following is the post I wrote that Debbie published on her blog earlier today.

In 2006, my then 7-year-old sister, Taylor, was diagnosed with a rare, brain-based disorder called Batten disease. Over time, kids with Batten disease lose their vision, cognitive skills, speech and other basic functions, like swallowing and walking. There is no known cure or effective treatment, and the disease is always fatal.

Two years after Taylor’s diagnosis, my sister, already blind and suffering from other effects of Batten disease, signed up for Girls on the Run at her school. An older student named Mary-Kate served as her sighted guide. Mary-Kate and Taylor each held one end of a jump rope so that Taylor could run like the other girls.

Taylor, Mary-Kate and their Girls on the Run team ran their first real 5K at Charlotte’s Thunder Road Marathon on a frosty day near the end of 2008. Mary-Kate told us Taylor stumbled and fell a few times, but each time, she pulled herself up and insisted on finishing the race. The pair reached the finish line in just under an hour.

To this day, watching my blind sister cross the finish line at Thunder Road remains one of the most moving things I’ve ever witnessed. I played soccer for 20 years and always ran to stay in shape. But running took on a new meaning for me that day at Thunder Road, and that following spring, I started running races for Taylor. I ran my very first half marathon at Thunder Road, at the site of her incredible feat, in late 2009.

It’s been nearly five years since I watched my sister and Mary-Kate cross the finish line at Thunder Road, and though my sister remains as brave as ever, she’s no longer able to run. To honor her courage on the racecourse and support Taylor’s Tale, the non-profit organization I co-founded, I decided to run the Thunder Road Half Marathon blindfolded.

The race was scheduled for Nov. 16. On June 5 – National Running Day – I laced up my Brooks shoes and jogged to the home of Andrew Swistak, my friend and sighted guide for Thunder Road and a staff member at the school Taylor attended during that magical time with Girls on the Run. I experienced dizziness for my first few minutes as a blind runner, and I sprained my ankle when I got cocky and tried jumping a curb. But I didn’t fall, and by the end of the run, I knew we could cross the finish line on race day, just as Taylor did.

In total, Andrew and I trained together less than 20 times over a five-month span. I also cut down on my mileage in general, knowing that finishing the race and supporting the fight against Batten disease– not finishing with a great time – were our primary goals. Along the way, we managed to pick up extensive media coverage for our cause, including multiple TV stories, local print stories, online coverage and the cover story of a statewide magazine.

Finally, race day arrived. I headed uptown with Andrew and Dr. Steve Gray, the University of North Carolina gene therapy expert whose research Taylor’s Tale is co-funding; Steve would run the half marathon with us. My mom, president of Taylor’s Tale, and my husband, John, rode along; they’d run the 5K and help Taylor’s Tale have one of the largest teams at Charlotte’s largest road race, with 57 official members and a huge cheering station at the race’s final turn.

Just before the race began, I did one final TV interview and took a few pictures for another magazine. Then, we were off! We started with the early starters group, 30 minutes ahead of the official start, for safety reasons. The pace car forced us to run more slowly than we would have liked, so we lost time over the first two miles. After what felt like an eternity, he cut us loose, and we found our stride.

For most of the race, I ran “tethered” to Andrew by a two-foot bungee cord for safety. But at times, when he felt that it was safe to do so, he took the cord and allowed me to run untethered. At one point, we ran down the center of one of Charlotte’s most beautiful streets, a four-lane road covered by a canopy of huge, old trees and lined with stately homes. I ran untethered for what felt like ages, and during that stretch, I felt as if Taylor was with me, lighting my way.

Despite our slow start, the end came in less than two hours – almost too soon. As we approached the Taylor’s Tale cheering station at the race’s final turn, Andrew again took the bungee cord, and I made a 90-degree turn on his verbal direction alone. Close to 100 people clad in Taylor’s Tale purple and glitter, including 70 teenagers from a wonderful partner organization called Playing for Others, chanted my name as we ran past the station. And as we made for the last stretch and I reached for that last burst of energy, I knew I wanted to cross the finish line untethered.

There were no other runners around Andrew, Steve and me as we approached the finish line – something I didn’t learn until later, when I saw Steve’s photos. And during that last stretch, time stood still. When we got close to the timing mats, I picked up speed; I always sprint to the finish line in my races. And amidst the cheering, I heard Andrew yell, “Jump!” and then, “Jump!” for the second mat. And then, at 1:59:58, he pulled me to a stop, and I lifted the blindfold, and the soft light of the overcast day came pouring in, and I saw my mom and melted into her, both of us crying. I don’t know how long we stood there in that position, but when I opened my eyes, I realized we were engulfed by those 70 teenagers from our cheering station; they’d taken off after us when we made our final turn and surrounded us in the finish area. It looked like a scene from the end of a Disney movie, and I half expected them to carry us out of there.

Photo credit: Well-Run Media+Marketing, LLC

As the world and reality came rushing back to me, it hit me that the only thing missing from the finish line was my sister. Taylor – my reason for running – wasn’t well enough to come to the race. But even if she could have made it, she’s blind, so she wouldn’t have been able to see how we turned Charlotte into a sea of purple and love for her.

Team Taylor’s Tale helped make this year’s Thunder Road race a day that will have an incredible impact on the fight against Batten disease and other rare and genetic diseases, and it will forever live on in our hearts. We haven’t crossed the ultimate finish line yet, because we don’t have an answer for kids like my sister. But I believe we can write the happy ending to Taylor’s Tale, and I’ll never stop running – or fighting – until we do.

You can donate to help save kids like Taylor here. Taylor’s Tale is a 501(c)3 non-profit organization, and all gifts are 100 percent tax-deductible. Our website makes it easy to give and provides other ways you can get involved in the fight against rare and genetic diseases.

Stay in touch and spread the word by liking us on Facebook, following us on Twitter and Pinterest and following my blog. Learn more about Taylor’s Tale at http://www.taylorstale.org.

Questions:

Have you ever tried to close your eyes briefly while walking or running outside to experience the sounds and smells around you?

Do you have any questions about Taylor’s Tale or Batten disease?

Do you know anyone fighting a rare disease (rare diseases affect one in 10 Americans!)?

Wide Diversity of NPOs

Published: December 8, 2013 ~ 0

By Laura King Edwards

A nonprofit organization (NPO) is an organization that uses surplus revenues to achieve its goals rather than distributing them as profit or dividends.

While not-for-profit organizations are permitted to generate surplus revenues, they must be retained by the organization for its self-preservation, expansion, or plans. NPOs have controlling members or a board of directors. Many have paid staff including management, while others employ unpaid volunteers and even executives who work with or without compensation (occasionally nominal). Where there is a token fee, in general, it is used to meet legal requirements for establishing a contract between the executive and the organization.

Designation as a nonprofit does not mean that the organization does not intend to make a profit, but rather that the organization has no owners and that the funds realized in the operation of the organization will not be used to benefit any owners. The extent to which an NPO can generate surplus revenues may be constrained or use of surplus revenues may be restricted.

The Speech of Angels

Published: December 5, 2013 ~ 2

By Laura Edwards

“Music is well said to be the speech of angels.” ~Thomas Carlyle

The Sound of Music, Taylor’s favorite movie, is on TV tonight, and the Taylor’s Tale Facebook page received the following note from one of my sister’s angels:

This message is for Taylor!

Tayyy! I’m watching Sound of Music and can’t help but think of you and the times we sang Do Re Me! I hope you are singing it in your heart right now!

Miss you and love you!

I remember a time when Taylor sang every note with Maria. But while the governess’ voice will forever grace the WWII-era Austrian countryside, my sister’s singing voice has gone silent.

Batten disease is ruthless, but it can’t touch what’s in our hearts. And in her heart, Taylor is always singing.