Why I’m Still Fighting Rare Disease

Published: December 21, 2014 ~ 2

By Laura Edwards

By Sharon King

I checked on Taylor as she was sleeping this morning. She had the most beautiful and peaceful smile. It was one of those precious moments you remember forever. I wondered what she was dreaming. I often wonder what she feels, thinks, dreams and fears. Batten disease really has a hold on her now, but we still try to give her the most normal life possible. Whatever she feels, thinks and dreams, we pray for happiness and peace for things she may fear. That’s really no different from what any parent wishes for his or her child.

Parents commit to helping their children follow their dreams and giving them the tools to battle their fears. But when your child has a life-threatening, rare illness, parenting takes on a new dimension. Serving as a guide for dreams come true and battling monsters becomes bigger than our children. For many of us, it becomes more about all of the children past, present and future whose dreams and fears include rare disease. I’m there.

It’s been nine long years since Taylor’s diagnosis. I imagine many people wonder why I continue to fight, why I still believe.

Rare is not an excuse. It’s too darn easy to write off rare disease as “unfortunate.” It’s definitely unfortunate, but it happens more often than you might expect. There are approximately 7,000 rare diseases and disorders, and more are being discovered each day. Thirty million people in the United States are living with rare diseases; globally, it’s estimated that 350 million people suffer from rare diseases. About half of these people are children; 30 percent of them will not live to see their fifth birthday.
The costs are enormous, both in terms of human suffering and economic impact. According to our partner, the EveryLife Foundation for Rare Diseases, 95 percent of rare diseases don’t have a single FDA-approved drug treatment. During the first 25 years of the Orphan Drug Act (passed in 1983), only 326 new drugs were approved by the FDA and brought to market for all rare disease patients combined. Taylor takes multiple drugs, and we continue to add expensive medical equipment. Since January 2014, she’s visited the ER three times (once via medic) and had two separate hospital stays (one for six nights). All of this, and just to treat her symptoms—not the root cause of her disease. Just imagine the costs for Taylor alone in 2014. Then, multiply that by 30 million. Wait…go ahead and multiply the number in your head by the worldwide number of 350 million people. You can’t imagine it. It’s mind-boggling. What we have is a serious public health problem.

Did I give rare disease more than a passing thought before Taylor’s diagnosis? No, of course not, and if I did, it likely sounded something like, “Glad it’s not my family or me.” I know better now.

The problem of rare disease belongs to all of us. Each of us can do something to help. Significant progress can happen with greater awareness, advocacy and funding. And in the coming weeks leading up to Rare Disease Day 2015 at the end of February, I’m inviting other rare disease advocates to share their thoughts on how we can all get involved and make a difference.

We know the facts. The question is, will we talk, or will we ACT? Hope requires action, and there are 350 million people who need your help.

Yesterday, the Charlotte Observer printed this quote, always one of my favorites:

“I dwell in possibility.” ~Emily Dickinson

Please join Taylor’s Tale in creating new possibilities for people like Taylor. Together, we can change lives.

Wishing you joy, peace and beautiful dreams this holiday season and into the New Year.

Do you have an idea for how the average Joe or Jane can make a difference in the fight against rare disease? How can citizens help millions suffering from rare disease by applying their skills in areas like awareness, advocacy and fundraising? Leave a comment below or send us a note to join the conversation.

Christmas After Batten Disease

Published: December 11, 2014 ~ 2

By Laura Edwards

Family has always been important to me, and my family has always made a big deal out of Christmas.

Though my brother and I are grown and my sister is 16, I know that on Christmas morning, we won’t be allowed downstairs until my parents are ready and my dad has his camera phone locked and loaded. Santa Claus doesn’t wrap the gifts he leaves at my parents’ house, and when Stephen and I were little, Dad thought we’d try to sneak into the family room before dawn to peek at the goods. To foil our plans, he set booby traps, like paper Scotch-taped to the doorjambs and verbose notes from Santa’s elves warning us of the measures in place, from retinal scans and tripwires to claymores and drones. He always signed the notes with a smiley face and “Merry Christmas.” After Dad led our human train into the family room at an agonizingly slow pace and we dove into our respective piles of gifts, we dug into Mom’s homemade monkey bread and egg and sausage casserole and ate till we couldn’t eat anymore. It’s been years since I wrote a letter to Santa Claus, but Dad still sets traps and writes notes and leads the train every Christmas morning.

I still remember the first year Stephen and I had to help Taylor find her way to the family room. She’d lost her vision to Batten disease and was unsteady on the stairs in her nightgown and fuzzy socks. In time she’d develop such a keen sixth sense that she could fly up and down those stairs despite the blindness. But in those days my sister was still afraid of the dark. We all hoped and believed she’d find a way to beat Batten disease. Lying in bed at night I even imagined she’d see the light again one day.

So much has changed since my sister’s diagnosis in 2006. When someone you love is fighting a chronic illness with no treatment or cure, you fall into a habit of marking time by holidays and life events and how much things change from one to the next. I remember how difficult it was watching Taylor search for the stairs that first Christmas After Batten Disease. But now I’d give anything to have one day with my sister as she was then – still able to pull surprises out of her stocking and sing along to her favorite Christmas carols and eat Mom’s monkey bread at the dining room table. All normal things we take for granted. All things Batten disease has robbed from her.

I can’t go back in time, and I can’t cure my sister. But Christmas Day will still come, as it always has. And if loss has taught me anything, it’s taught me that life is about living in the moment and recognizing the good that you still have.

Giving Thanks, and A Walk to Remember

Published: November 26, 2014 ~ 4

By Laura Edwards

Thanksgiving, a national holiday characterized by gluttonous eating, rivalry games, parades, Black Friday specials and tryptophan hangovers, began as a simple gathering hundreds of years before the invention of football and shopping malls. At its core, Thanksgiving is “a day for giving thanks for the blessing of the harvest and the previous year” (Wikipedia).

It’s been the toughest 11 months of my sister Taylor’s fight against Batten disease since her diagnosis on a hot summer day more than eight years ago. Her first wheelchair arrived on my parents’ doorstep to kick off 2014, and my sister, who used to run 5Ks and rule wedding dance floors, can’t stand without assistance. She lives in a dark world, she can’t sing along to her favorite songs any longer, and she won’t get to taste the turkey at our family’s Thanksgiving dinner tomorrow.

But the fighter I know is still in there. She may struggle to stand when we move her from her wheelchair to her bed or shower seat, but last week, with her physical therapist Jessica at her side, she climbed the stairs at the local YMCA–and then she walked back down. Jessica said Taylor worked harder in that hour than most people work in an entire day, and I believe her. That’s just like my sister.

When Taylor was first diagnosed with Batten disease, I was convinced we’d save her life. I believed with all of my heart that “fatal” didn’t mean fatal for her.

Batten disease has taught me a lot in eight long years. But my sister has taught me more. Tonight, on the eve of another Thanksgiving Day with the people I love, I’m thankful for the wonderful years we’ve had together, in spite of the pain Batten has caused. And when I watch Taylor on this video, I know in my heart that I still believe. I know that no matter what the disease does to her body, her spirit is stronger.

Take that, Batten disease.

Thunder Road 2014: The Magic and the Wonder

Published: November 16, 2014 ~ 4

By Laura Edwards

I spent months training and long hours planning for the Thunder Road Half Marathon last year. Running the 13.1-mile race blindfolded, tethered for most of the way to my friend Andrew Swistak, gained national attention for Taylor’s Tale and our fight against Batten disease, and it gave me the experience of a lifetime. When the dream ended, I said it could never be repeated.

But it didn’t seem right to treat the 2014 edition of Thunder Road like just another race on the race calendar, especially after our friends at the teen service organization Playing for Others asked our permission to walk the Thunder Road 5K blindfolded to honor Taylor and our cause.

One week before race day, I came up with a crazy plan: run the last leg of the 2014 Thunder Road Half Marathon blindfolded – and untethered. Never mind that:

I’d run blindfolded just once since the 2013 Thunder Road Half Marathon (an unofficial 5K with Andrew to commemorate National Running Day in June).
I wouldn’t get an early start this year (thus putting me right in the crush of thousands of other runners).
Andrew’s sidelined with a foot injury, meaning I’d need to find another guide on short notice.

But I’ve been stubborn since I was a kid, and once I get an idea in my head, I’m tough to shake. My husband John says I always up the ante, and he wouldn’t be surprised to see me run a marathon blindfolded while juggling chainsaws if I thought it’d help our cause.

I don’t know to juggle, but I’d run blind and untethered for short stretches before. So one week before race day, I put out a call for runners aiming to run the half marathon somewhere around my goal pace. Even though I planned to run the final stretch untethered, I needed someone to help me avoid obstacles, from sewer caps and curbs to other runners. Almost immediately, my friend Alyson Vaughan responded, and I had a guide.

By the Tuesday prior to race day, I had the ear of WSOC-TV, Charlotte’s ABC affiliate and the top local station. We filmed a story about Playing for Others’ effort and my crazy plan for the end of the race with anchor Natalie Pasquarella Wednesday afternoon; while we ran/walked in the sunshine at Charlotte’s Freedom Park, Taylor had her second surgery of 2014 at Levine Children’s Hospital. As Playing for Others teen member Anna Harden guided me around the pond, I thought about how Anna and Taylor are about the same age, and I wondered if they’d be in the same circles of friends if my sister wasn’t sick. Batten disease has stolen so much.

The WSOC story aired Friday; see it here. All day, Alyson and I traded emails and texts about everything from purple shirts to parking plans. We didn’t have time to practice together.

On Saturday morning – race day – Mom pulled into my driveway a few minutes before 6 a.m. She’d signed up for her second 5K, and she looked fabulous in her purple running gear. But her phone rang the moment she walked through my back door. Taylor had just had a big seizure, Dad said. And just like that, Mom’s Thunder Road experience was over. “I hate Batten disease,” I said to John as my mother’s car pulled away.

It was 22 degrees when John and I arrived uptown, and I tried to keep my teeth from chattering as I did an interview with Charlotte’s NBC affiliate by the finish line (watch the story here). When Alyson arrived, we had our first and only “practice session.” I pulled the blindfold over my eyes, and we ran up and down the park milling with people in front of the baseball stadium as Alyson gave me verbal direction. We only bumped shoulders once. Then, it was go time.

I’ve been banged up since I ran the Great Smoky Mountains Half Marathon nearly two months ago, and I didn’t train for Thunder Road. But we lined up with the 1:45 pace group led by the Charlotte Observer’s Théoden Janes and hoped for the best.

Nine miles later, we were still on pace. That’s when my legs got angry. My calves were so tight I thought my muscles might pop. But when my eye caught the photo of Taylor finishing the 2008 Thunder Road 5K slipped inside my armband, the pain melted away.

About 1.25 miles short of the end, we made the final turn onto S. Mint Street, a not-quite-straight road in the heart of Charlotte. I’d been running to Alyson’s left for much of the race, but when we reached Mint, I switched to her right, because I’d always run to Andrew’s right. I slipped the blindfold down over my eyes, and we headed for the finish line.

We bumped shoulders a few times, but Alyson was a pro. She helped me avoid the curb and kept me on course when the road twisted and turned. In the background, someone shouted my name; I waved and pushed ahead (I learned later that the voice belonged to my friend Sharon).

Somewhere near the end – I don’t know exactly where – we passed the Playing for Others cheer station on our right. Alyson told me we were approaching a sea of purple, but she didn’t need to say a word; I could hear the cheers and knew it had to be them.

When I ran the 2013 race, I ran the last leg with almost no one around us, because we’d gotten a 30-minute head start on the rest of the field for safety reasons. But this time, Alyson and I were running in a pack for most of the 13.1-mile race, including the final 1.25-mile leg I ran blindfolded. In a crowded finish line area, the logical thing to do would have been to slow down or even walk.

But running that last stretch, I could only think of two things: my blind sister running across the finish line of the 2008 Thunder Road 5K, and the feeling I had when I hurdled the timing mats last year and landed in my mom’s arms. The final words from Playing for Others member Anna Kilguss’ poem, words that graced the backs of the team’s shirts for yesterday’s 5K, echoed in my head: “You believe. We watch. She flies.”

And then, we were in the finish chute, and instead of slowing to a jog or walking, I was sprinting in the darkness (like I’d always known deep down that I would), and Alyson was yelling “Jump!” and “Jump!” again as I hurdled the timing mats. The last thing I remember before getting my medal is Alyson yelling “Stop!”

Tears welled up in my eyes as I simultaneously hugged my friend, received my medal, realized we’d both set new personal records for the half marathon (1:44:37) and caught a sea of purple and love in the corner of my eye – the Playing for Others crew.

But I didn’t cry. Instead, I lost myself in the magic and the wonder of the moment – the great beauty that can be found in even the worst tragedies if you only believe. And hours later, when I hung my eighth half marathon medal around my sister’s neck, wrapped my arms around her thin body and breathed in her courage, I soared.

Please help me write the happy ending to Taylor’s Tale. To support our fight to develop treatments for Batten disease and other rare and genetic diseases, click here.

Thunder Road: The Skinny

Published: November 13, 2014 ~ 0

By Laura Edwards

The 2014 edition of Charlotte’s biggest race is less than 48 hours away. I think I’m ready for my second half marathon of the fall season (if not the bitter cold – the temperature for the starting gun is expected to be 27 degrees).

You can’t bottle the kind of magic that happened on the course at Charlotte’s Thunder Road Marathon in 2013. Every moment, from the magazine cover two weeks before race day to the heart-racing start to the storybook finish and the Runner’s World column the following spring, exceeded my expectations. The moment I put my medal around my laughing sister’s neck hours later – in the quiet and privacy of my own home – may have been the best moment of all.

But the 2014 race will have its own brand of magic. Our friends at Playing for Others bring a passionate, loving, infectious energy to the fight against rare disease, and you can’t bottle that either. I know they’ll write an unforgettable chapter when they step onto the Thunder Road 5K course with blindfolds and tethers and walk 3.1 miles in the darkness in honor of millions like Taylor.

My mom, too, will be an angel for Taylor this Saturday when she runs her second 5k. She’ll be joined by others running in purple for the girl who refused to let Batten disease get in her way – until it did.

As for me? I’m running 13.1 miles at Thunder Road, but I’m saving my best for the final stretch.

That’s when I’ll trade light for darkness one more time and follow my sister’s footsteps home.

Want to support Taylor’s Tale and Playing for Others at Charlotte’s Thunder Road Marathon race events this Saturday? Here’s the skinny:

The half marathon starts at 7:45; I expect to finish between 9:30 and 9:40.
The 5K starts at 8:15; the Playing for Others crew could finish as early as 8:45.
Playing for Others is hosting an official cheer station at the corner of Graham and Stonewall (mile 13 of the full marathon course). If you want to find a pro-Taylor’s Tale crowd during the race, this is your spot!
All races finish on S. Mint Street behind BB&T Ballpark.
Find course maps here.
Find other race information here.
p.s. if you live in the Charlotte metro area, watch a feature story about our 2014 effort on WSOC Ch. 9 at 5:30 p.m. Friday.

Charlotte’s Thunder Road Half Marathon: The Next Chapter

Published: November 9, 2014 ~ 5

By Laura Edwards

We’re approaching the first anniversary of the 2013 Thunder Road Half Marathon, where the story of Taylor’s courage on the race course and in her fight against Batten disease captured the attention of people across the nation. The moment I crossed the finish line of that race blindfolded, I knew the magic of that day could never be repeated.

But I can’t stop running for Taylor, and I’m on a new mission now – a mission to run a race for her in all 50 states to spread this story far and wide. I’ve run around the rim of Oregon’s Crater Lake, where she and my parents found solace during her time in a historic clinical trial in Portland; I’ve run through Tennessee’s Great Smoky Mountains, just a stone’s throw from the village of Blowing Rock where we made a lot of happy memories together and my sister made the best “senior” flower girl ever on my wedding day; I’ve run in Taylor’s purple witch costume in a Great Pumpkin race in South Carolina to commemorate Halloween, her favorite holiday when she could still trick-or-treat. In the next 10 months, I’ll take Taylor’s story from North Dakota’s Red River Valley to Hawaii’s lush gardens.

First, though, comes the 2014 edition of Charlotte’s Thunder Road Half Marathon, where I’ll run 13.1 miles for my little sister as she recovers from her second surgery in a difficult year. About the time I reach the four-mile mark of the half marathon, at 8:15 a.m., approximately 30 parents and teens affiliated with an organization called Playing for Others will begin the Thunder Road 5K. The parents will be blindfolded; the teens will be their guides. In completing the 5K blindfolded, they’re honoring Taylor’s story and the fight for a better future for millions of people like her.

I wish I could run my race AND be there to see Playing for Others finish the 5K. But my experience training to become a blind runner and my relationship with my blind sister have taught me that some of the most beautiful things in this world do not have to be seen to be felt.

Running for Taylor in 50 States: South Carolina

Published: October 25, 2014 ~ 3

By Laura Edwards

When I crossed the finish line of Charlotte’s Thunder Road Half Marathon blindfolded last fall, I knew the race would be a tough act to follow. But I didn’t intend to stop running for my sister, Taylor, and our fight against Batten disease and other rare diseases.

On National Running Day, I shared my plan to run a race in all 50 states – a feat not as rare as running 13.1 miles blind but one that I hope will help me spread our story far and wide.

In August, I placed fourth in Oregon’s 13-mile Crater Lake Rim Run. Five weeks ago, I placed second in Tennessee’s Great Smoky Mountains Half Marathon.

This morning, I hopped across the border to South Carolina for the Great Pumpkin 5K and state number three.

I picked the race because of its proximity to Charlotte; the Great Pumpkin 5K is run mostly on or near the Winthrop University campus in the town of Rock Hill, less than 30 minutes from where all of my family lives in south Charlotte. Taylor’s health is declining, and I haven’t seen her at a race in a long time. As much as I love running, I always try to remember why I run. I picked the Great Pumpkin 5K as my South Carolina race because I wanted Taylor to be the first person I hugged at the end.

Usually a stickler for race preparation, I broke almost all of the rules this week. I stayed up late every night and gorged on junk food at an office Halloween party on Friday. I ran very little in the two weeks leading up to the race after suffering a bad ankle sprain hiking in Utah earlier this month. It was still sore when I went for a quick jog this week, but I just gritted my teeth and watched out for potholes.

I have a closetful of performance running apparel. But two hours before the race, I pulled on a long dress made of fake crushed velvet and purple sequined lace and a floppy, matching hat. The stuff wasn’t made to wick sweat.

But it was Taylor’s Halloween costume three years ago – the last time she went trick-or-treating. That made it magical.

I got out to a quick start. I slowed a bit midway through the race as my ankle began to throb. But I got a boost from the spectators sprinkled along the course as they shouted encouragement. Running a 5K in full costume is an effective way to attract attention. I wish I’d had a handful of Taylor’s Tale wristbands to launch at them; alas, the purple witch costume doesn’t have pockets, but I can yell “Visit taylorstale.org!” like my life depends on it.

With about half a mile to go, I knew I was near the front of the pack. I found another female runner to “draft.” I settled into a comfortable pace and waited till the final turn to pass her and accelerate into a full-on sprint. Don’t knock the purple witch dress; it’s more aerodynamic than you’d think.

I crossed the finish line 12th overall and first in my division.

I got a big hug from my husband, John, and my dad. Later I got a hug from the runner I’d passed in the last half-mile, a woman named Dianne in the masters division. She ran Thunder Road last year, and she knew our story. I gave her the wristband on my arm as we waited for our age group awards and the morning sun warmed our skin, and silently I reaffirmed the importance of these runs for the thousandth time.

But I never got to hug my sister at the finish.

Nothing about Batten disease is easy. But 2014 has been an especially rough year for Taylor. This year, my sister stopped talking. She ran two 5Ks blind, but now she’s in a wheelchair. She got a feeding tube in June. She’s been to the emergency room multiple times. Batten disease is a monster. And Batten disease is winning the battle for my sister.

All week we’d hoped Taylor would be able to come to the race, because that would mean she was having a “good” week. But yesterday was a really bad day. Yesterday marked another milestone for Taylor, and in my sister’s world, milestones aren’t a good thing. Milestones represent another rabbit hole; another point-of-no-return.

I hate Batten disease so much. I hate what it’s doing to my sister and the people I love. I hate that the Halloween Taylor wore the purple witch dress feels like a million years ago, because figuratively speaking, it was.

But I’ve got more races to run and stories to tell, and Taylor’s Tale has great work left to do. While I don’t know what the future holds, I know Taylor and I have tomorrow. And tomorrow is always something worth fighting for.

Make a tax-deductible gift today and help write the happy ending to Taylor’s Tale.

Playing for Others Gears Up for Thunder Road

Published: October 17, 2014 ~ 4

By Laura Edwards

Running Charlotte’s Thunder Road Half Marathon blindfolded last year was a surreal experience. With the help of my guide, Andrew, and countless other supporters, we accomplished every goal we set out to achieve.

The story didn’t end when we crossed the finish line, and while I’ll run Thunder Road sighted this year as a quick detour from my quest to race for Taylor in all 50 states, a group of teens especially close to my heart has something incredible planned for Charlotte’s largest road race.

Playing for Others is a teen organization focused on personal development, service and the arts. Taylor’s Tale was one of its chosen charities last year, and Taylor participated in its buddy program. Her “buddy,” Nicole, now a freshman in college, is a friend for life.

If you went to Thunder Road last year or saw any of the photos or many news stories on our effort, you may remember these amazing kids. About 70 of them wore purple tutus, sparkle and glitter. They wielded signs and pompoms and packed into our official cheer station at the race’s final turn. When we passed the station, all 70 of them took off after us in an unscripted, spontaneous, gorgeous burst of emotion. And when I took off the blindfold after crossing the finish line and hugged my mom, they surrounded us – and didn’t leave. It was like the end of a Disney movie, and I half expected them to carry us out on their shoulders. It was beautiful and exciting and not cheesy at all.

Playing for Others is supporting a new cast of deserving charities this year, and Taylor is no longer in the buddy program. Many of the kids in that crowd on race day graduated and went off to college. But Playing for Others hasn’t forgotten about Taylor’s Tale, and they’re creating their own version of the blindfolded run at this year’s Thunder Road 5K.

What do the kids have in store for this year’s race?

Teens have signed up to run/walk the 5K tethered to parents. The teens will be sighted; the parents will be blindfolded. Anyone not running will paint the sidelines purple with specially created t-shirts and encourage runners with their tireless spirit.

I went to the group’s first practice this past Sunday. Some of the kids and their parents are runners; some of them have never run a race. But that’s not what’s important. I remember well how Taylor was not a “runner” when she signed up for Girls on the Run in the fall of 2008. Yet she overcame blindness and the effects of Batten disease to run not one, but two 5Ks tethered to a guide. This is not about physical gifts – it’s about sheer will. And Taylor always had that in spades.

Please be on the lookout for these amazing ambassadors for Taylor’s Tale at Thunder Road on Saturday, November 15. Thank them for their amazing dedication to people like Taylor and for taking on such a remarkable personal challenge. I understand what it’s like to learn to run blind – I’ve been there. But I believe they’ve got what it takes.

On another note, if you’re planning to run the Thunder Road 5K, half marathon or full marathon, please consider running for our Taylor’s Tale team. Simply select “Taylor’s Tale” as your team when you register on the race website and wear purple on race day. Let’s paint Thunder Road purple again for the fight against rare diseases!

Running for Taylor: Finishing 2014 Strong

Published: September 28, 2014 ~ 0

By Laura Edwards

On National Running Day, I shared my plan to run a race in all 50 states – a feat not as rare as running 13.1 miles blind but one that I hope will help me spread our story far and wide.

With Oregon and Tennessee crossed off the list, I’m looking ahead to the remainder of 2014 and beyond. Here’s what I have in the works:

Great Pumpkin 5K Race – Saturday, Oct. 25 in Rock Hill, South Carolina

I don’t run many 5Ks, but I signed up for the Great Pumpkin 5K Race, a small event hosted by the Rock Hill Striders just inside the South Carolina border, because I want, almost more than anything where running is concerned, to see my sister at the finish line of a race. Taylor hasn’t been able to come to one of my runs since I logged 13.1 miles on a quarter-mile loop around the town green in Davidson, North Carolina for a Batten Disease Support & Research Association fundraiser in June 2012. But Rock Hill is 20 minutes from my parents’ house, and the race starts later than most, so we’ve got a shot. I’ll wear a purple Halloween costume that captures the spirit of Taylor for the Great Pumpkin 5K. Have ideas? Let me know in the comments! Want to run with me? Sign up here!

Charlotte’s Thunder Road Half Marathon – Saturday, Nov. 15 in Charlotte, North Carolina

I’m not running Thunder Road blindfolded this year, but I’ve been signed up for the half marathon since registration opened in January. Playing for Others, the wonderful teen organization that made our cheer station come alive at the 2013 race, is supporting us again this fall. They have something new up their sleeves; I’ll be sharing their plan in a future post, but for now, you’re invited to join us by registering to run the 5K, half marathon or full marathon for the Taylor’s Tale team. Sign up here!

Huntersville 5K Guinness World Record Attempt

On Saturday, Dec. 13, the Charlotte Running Club will attempt to break the world record for most runners tied together while completing a 5K race. The current record stands at 116 runners, and the club hopes to have at least 200 runners. After running Thunder Road blindfolded and tethered to my good friend Andrew Swistak last year, I couldn’t resist signing up to be part of this cool event. You can still join us! You don’t have to be a Charlotte Running Club member, and there’s no cost to participate on the team, though you have to register for the race. For the $20 registration fee, you’ll get two t-shirts (race t-shirt and Guinness World Record attempt t-shirt) if you register by Nov. 8. Send an email to run.charlotte@gmail.com if you’re interested in being on the team. Do this before you register!

To 2015…

I’ve already registered for five races in 2015 including events in four states outside my home state of North Carolina. Taylor’s courage inspires me to run farther and work harder in all that I do. I can’t wait to share more of this journey with you! Want to stay up to date on my quest to run in all 50 states for the fight against Batten and other rare diseases? If you haven’t already, subscribe to the blog to get updates. Thanks for your support!