Touchdown for Taylor: Five Years Later

By Laura Edwards

Five years ago tonight, a small but determined group of women known as “Taylor’s Tale” threw a huge party in honor of my little sister and kids everywhere fighting Batten disease. We called it “Touchdown for Taylor.”

Touchdown for Taylor house

When guests arrived, Sir Purr, the Carolina Panthers mascot, greeted them on the steps of the beautiful home of our gracious hosts.

Sir Purr

Inside, they mingled with former Batten Disease Support & Research Association director Lance Johnston and researcher Sandy Hofmann, MD, PhD, who had just gotten a $50,000 grant from Taylor’s Tale – the birth of a project of paramount importance in the fight against infantile Batten disease.

Lance and Sandy

They heard a special message from NFL commissioner Roger Goodell and watched a slideshow of my then 9-year-old sister’s life that still chokes me up. They heard from my mom. They heard from me.

Sharon and Laura

They heard a great band, enjoyed each other’s company and ate incredible food.


They gave my family, just a little more than a year removed from Taylor’s diagnosis, a fire for the fight that burns to this day. And at the end of the night, they gave Taylor’s Tale $40,000 for that fight, matching our first-ever event, “Chapter One,” nine months earlier. Just as importantly, though, they energized us. They energized me. They helped me believe in my own words when I told people we’d find a way to beat Batten disease.


Taylor is not the long golden-haired, sighted, chattering, singing fourth-grader my parents left at home with a babysitter on the night of Touchdown for Taylor. But she still has every ounce of courage she had back then.

And we’re still fighting.

Watch the Video Message from NFL Commissioner Roger Goodell

View More Photos from Touchdown for Taylor

Read My 2007 Blog Post about Touchdown for Taylor

Might as Well Keep Running

By Laura Edwards

Yesterday afternoon, I drove to Davidson, NC, a quaint college town about 30 miles north of my home in south Charlotte, to take part in the second annual 24 Hours of Loopy on the town Green, an event to promote awareness of Batten disease and raise money for the Batten Disease Support & Research Association. When I arrived a few minutes after 2:30, a totally loopy, totally awesome ultra marathon runner named Jeff McGonnell had already been circling the patch of grass in front of the public library for close to 19 hours. Various others had come and gone – from serious runners in Jeff’s Davidson Area Running Team (DART) group to fun-loving 5-year-olds to walkers.

loopy costumeI slipped into the rotation a few minutes before 3 p.m. After my last race in April, I took it easy for most of May, and I didn’t expect to tally more than a couple of miles, maybe five or six at most, before finding a golf chair and kicking back to enjoy the live music. But I was having too much fun to stop at mile six. At mile seven, I picked up new garb (in return for making a donation, spectators could dress runners in crazy costumes). At mile 10, I realized I had enough time to run 3.1 more, even with a break for two oatmeal raisin cookies from the Soda Shop across Main Street. I hadn’t run more than eight miles since a 10-mile race on April 21. I hadn’t trained for a half marathon. I hadn’t eaten a pre-half marathon dinner the night before or half-marathon breakfast or lunch before leaving my house the day of (in fact, I’d inhaled two brownies on my way out the door). But I had blue skies overhead, a gentle breeze on my skin, live music on the course and a supportive crowd that included my parents and Taylor. I had pig ears on my head, a red boa around my neck and a grass skirt around my waist (what?! :)). I’d set out that day to run for Taylor. I still felt strong. Nothing hurt – too much. So I figured I might as well keep running.

Thirty minutes later, I finished my unofficial half marathon just as Jeff McGonnell began his final lap around the Green.

Some days, I want to quit fighting this fight. Just walk away. Some days, it just hurts too much. Some days, the hills are just too steep.

But somehow, I keep finding a way to shake those days off. I never stop hurting. I’ve never found flat ground. But I’ve never stopped fighting.

I entered this race. I’ve got some momentum. It doesn’t always feel good. I don’t get to stop and rest whenever I choose. But I’ve made progress. I hurt, but not so much that I can’t run. So I might as well keep running.

Laura and Taylor after Loopy

I’ll Run. I’ll Believe.

By Laura Edwards

Today is June 1, 2012.

It’s been 2,139 days since I learned about a devastating disease for the first time – in the very worst way.

It’s a day that marks the end of school, maybe forever, for my little sister.

It’s the first day of International Batten Disease Awareness Weekend.

It’s the first of three more days to believe.

In a few minutes, Jeff McGonnell, an ultra marathon runner from Davidson, NC, will begin his second annual “Loopy for a Cause” run around the Davidson town Green. He’ll run through the night and tomorrow morning, and when I arrive after lunch to join him for the afternoon stint, he’ll still be running. In all, Jeff will run for 24 hours. Last year, he ran almost 90 miles in support of the fight against Batten disease and children like my sister, Taylor (Jeff runs for Brandon and Jeremy Hawkins, who are friends of his son and have juvenile Batten disease).

In 24 hours, Jeff will say hello to a golf chair and a Gatorade, and the loopiness will end. In 48 hours, Batten Disease Awareness Weekend will come to a close. But our fight will be far from over.

Another 2,139 days from now, I’ll still be fighting like hell.

One day, I hope to use this space to tell you we’ve beat the damn thing – or at least knocked it down.

Until then, I’ll run. I’ll believe.

Note: I’m scheduled to run with Jeff from 3-4 p.m. on Saturday, June 2, but you can come out and support “Loopy for a Cause” anytime between 6 p.m. tonight and 8 p.m. tomorrow (the event will continue for two hours after the conclusion of the run). Click here to learn more.

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


One Amazing Kid

By Laura Edwards

JakeI know a 13-year-old kid named Jake Everett. Jake is the same age as Taylor and used to go to her school; they’re not classmates anymore, but that didn’t stop Jake from deciding to take on Batten disease, all on his own.

Jake set up a website at By the end of the first day, Jake had his first donations, including his own. Today is the site’s one-week anniversary. So far, Jake has raised $427; he hopes to raise $1,000 for Taylor’s Tale.

I can’t think of anything more awesome than kids helping kids. That’s why I love the piano playathon for Batten disease, an inspiring event that has grown from a few students playing in their teacher’s private studio four years ago to nearly 200 playing in multiple venues earlier this year. That’s why I could barely contain my emotions the day hundreds of kids at Taylor’s school turned their gym into an endless sea of sparkly pink and purple glitter and cardio crazed their way to raising more than $3,500 for the fight against Batten disease.

As an adult, I’ve found life to be quite complicated at times. Batten disease, and the domino effect it ignited in my family nearly six years ago, sure didn’t make things any easier. But as my mom likes to say, adults could stand to learn a thing or two from the kids, perhaps even more so in times such as these. Because kids just “get it.”

This spring, I asked our board members to write elevator speeches for Taylor’s Tale. In the meantime, I struggled with my own. My first draft sounded nice on paper; to deliver it verbally, though, I’d need to catch a ride to the top of a 200-story building. But Jake gets it:

Why this campaign?
Because Taylor King is a nice girl and Batten Disease is terrible. With enough money we can find a cure.

Yep – that’s a good enough reason for me. I could agonize over word choice all day. I could write something fancy. But in the end, I really just fight Batten disease because it’s terrible and it takes the lives of nice kids like Taylor. And if enough people BELIEVE, we WILL find an answer.

Please help Jake reach his goal of raising $1,000 for Taylor’s Tale! Visit his website at to learn more about his campaign. When you’re ready to give, simply click ‘Donations’ to make a secure online donation. Then, share it with everyone you know to help spread the word about Jake’s efforts and the fight against Batten disease. Thanks for helping this amazing kid save kids like Taylor!

Sweet Music

By Laura Edwards

boy playing pianoSunday marked the end of the fourth annual piano playathon for Taylor’s Tale. Here are the numbers: 141 students of 18 teachers played at five venues for 18 hours total over three separate days. In all, the events raised $3,004.26.

Here are some memories gifted to us this year:

  • The addition of a Suzuki violin group – especially touching for Taylor’s mom, because Taylor took Suzuki violin lessons the year we learned she has infantile Batten disease
  • A 6-year-old boy played a small violin, and he and his younger sister sang the Spiderman song together; Mom and Taylor sing that song every morning when they brush their teeth (they don’t know why – they just do!)
  • The students ranged from very accomplished/experienced to brand new – i.e. one girl just two months removed from her first lesson, yet willing to step up and play (and do a fantastic job!) for children with Batten disease
  • The little sister of the former student who played sans butterflies – with so much joy, in fact, Mom thought they’d have to close the piano lid at the end of her turn
  • The students who remembered meeting Taylor last year (she did not attend this year) and went out of their way to ask how she is doing
  • The adult student who returned on the last day of the playathon, not to play, but simply to listen
  • The students (children) who agreed to do interviews with the media that came to cover the event – and nailed them
  • The student who entered a beauty pageant and chose Batten disease as her platform
  • The boy (probably Taylor’s age or not much older) who played the Journey song “Don’t Stop Believin'” and played it a second time just for Mom, because “believe” is her favorite word
  • The former (now grown) student and childhood cancer survivor who couldn’t attend the playathon but supported it from afar with a donation

Mom listening to music

Thank you to the event co-chairs, Polly Greene and Pamela Tsai, and all of the teachers for their amazing efforts on behalf of Taylor’s Tale.

Thank you also to the venues – Burrage Music Company, Hopper Piano Company, Music & Arts, Maus Piano and Organ and Ruggero Piano.

Finally, thank you to all of the students who played for using their musical gifts to give the gift of hope to children with Batten disease.

Angels are Everywhere

By Laura Edwards

In the spring of 2006, The Fletcher School, a small, private institution in Charlotte, accepted Taylor into their incoming third grade class. It wasn’t until that summer – just weeks before her first day at Fletcher – that a geneticist delivered the crushing diagnosis of infantile Batten disease, and our lives changed forever.

Some people find it easier to block out life’s most painful moments, but I haven’t forgotten anything about the days and weeks following Taylor’s diagnosis. I remember when Mom called the school’s leaders and tried to put into words the tragedy that had befallen our family. She told them she would understand if they no longer had a place for my sister.

But The Fletcher School did more than just accept my younger sister into their student body. They adopted her. It has been nearly six years since the administration assured my mother they would figure things out together. Today, my “little” sister is almost as tall as I am and will be 14 in August. When she first walked through the doors of The Fletcher School as a third grader, she still had almost all of her vision; on the surface, infantile Batten disease had very little of her.

Even as Batten disease continued to tighten its grip on my sister during the past several years, I never worried that the kids at school would be cruel to her. I simply worried that they would be human – that they would get caught up in their own lives, and that Taylor, blind and struggling with her speech, would simply miss the wave.

It would be disingenuous of me to claim that Taylor has had the benefit of every moment – of every memory – that her friends have experienced. I refuse to sugar-coat Batten disease; nothing about it is easy; there is no silver lining. But her friends have made every effort to illuminate Taylor’s dark world with small acts of great love. I think many adults would do well to take a lesson from the students at Fletcher who have found a way to put a smile on my sister’s face when she has every right to be angry at the world.

A few weeks ago, my parents told me the kids and teachers at Fletcher were working on a “cardio craze” fundraiser for Taylor’s Tale.  They planned to ask Andre Hairston, a local celebrity and fitness instructor who had supported our organization in the past, to lead the session.

We didn’t hear much more after that. This morning, when Dad dropped Taylor off at school, he guessed that half the student body wore purple or pink – Taylor’s favorite colors. And when I entered the gym for the event this afternoon, I walked into a sea of glitter, sparkle and love. Fletcher cardio crazies event crowd

I can only imagine the number of inspiring stories that will continue to make their way to me in the coming days and weeks, but here are a few I heard today:

Students had to pay $5 to attend the fundraiser. But one student donated the contents of his allowance jar – over $150.

One student paid the minimum $5 to attend. The day before the fundraiser, she told one of the teachers she wanted her money back. When asked why, she produced a $20 bill. She explained that she received the money for her 16th birthday; when she realized that many children with Batten disease never get to celebrate their 16th birthday, she knew she wanted to give her birthday money to Taylor’s Tale. 

Taylor’s girlfriends danced with her throughout the entire event; when the crowd turned to face a different wall, they always made sure she faced the right way. When Andre invited the girls onto the stage toward the end of the program, they helped her navigate the stairs so she wouldn’t get left behind. 

The kids at Fletcher put on an event that took place in a school gym, lasted a mere 45 minutes and yet raised more than $3,500 in support of our fight against Batten disease. That is a lot of money. But I hope they know that more than the money they raised, the heart they put into the event – and the kindness they show toward my sister each and every day – are what define them. Today, they gave me a much-needed reminder that even in the face of great tragedy, angels are everywhere. Fletcher cardio crazies event girls

Special thanks to the Fletcher School’s students, teachers and administrators and Andre Hairston for staging this incredible event for Taylor’s Tale.

Chapter ?

By Laura Edwards

Chapter OneFive years ago tonight, 160 people gathered at a private home in Charlotte. All 160 knew my family in some way and that Taylor had recently been diagnosed with something called Batten disease.

Near the end of the evening, my mom, dad, brother, husband and I stood together in front of all of those people. My mom thanked everyone for coming and appealed to their hearts. Lance Johnston, executive director of the Batten Disease Support & Research Association, stepped in, educated the crowd on the disease and appealed to their minds. Finally, with my brother at my side, I made at once the easiest and most difficult speech of my life. I cannot remember the words I spoke – I rarely prepare remarks in advance and did not do so that night – but I remember how they felt. After I closed, my dad, who until that moment had remained silent in the background, stepped forward and read a Father’s Day card from Taylor.

Moments later, that roomful of people donated $40,000 – capping the first of many successful evenings for Taylor’s Tale.

We called it Chapter One.

I’m battle-weary. And I know we’re on borrowed time. But I still believe. And if you are one of the 160 people who shared Chapter One with us – and you’re reading these words now, five years later – that means a part of you still believes, too. My family’s fight has gotten much tougher since that night, but on the other hand, wonderful, amazing things have happened in research, shining a bright light into the dark world of Batten disease. Much of the progress that has been made specifically in the area of infantile Batten disease – the form that affects Taylor – may never have happened if not for the generosity you showed on the night of Chapter One.

We stopped counting chapters after that first night. We don’t know how many chapters we’ll need. But we’re focused on writing the happy ending to this tale, once and for all. And we’ll do whatever it takes to get there.

View Photos from Chapter One