The Sunshine Award and 10 Things About Me

Published: August 29, 2013 ~ 10

By Laura Edwards

sunshine award logo Debbie at Deb Runs nominated Write the Happy Ending for the Sunshine Award. This award is a way for bloggers to recognize other bloggers who are positive and inspire their readers in a creative way. Thanks so much for the nod, Debbie!

Here’s how it works: bloggers who are nominated and choose to participate should:

Include the Sunshine Award logo on their blog or in a post.
Link to the blog of the person who nominated them.
Answer 10 questions.
Nominate 10 others to receive the award, and link to the nominees in the post. Let them know they have been nominated.

Debbie asked me to answer the following questions:

If money were no object, what one item would you buy tomorrow? Does a vacation count as an item? If so, I’d buy a trip to New Zealand. I’ve hiked to some of the most gorgeous natural wonders in the United States, but my dream vacation is a hiking trip on the South Island of New Zealand with a pit stop at one of the South Pacific Islands (i.e. Fiji) on the way home.

What chore do you enjoy doing the least and why? I HATE ironing. Hate it. My grandfather learned how to iron clothes when he served in the Marines, and I always marveled at his talent for my least favorite chore. I’m cheap about a lot of things, but I’m not above taking my ironing basket to the dry cleaner’s and paying someone else to do it for me.

Most of the clothes that can be found in your closet are from what three stores? I have to cheat on this one – I’m picking four. J. Crew for work, REI and the Gap for weekends and Run for Your Life (a Charlotte running store) for running shoes and gear.

If you could use only one beauty product for the rest of your life, what would you choose? I had white-blonde hair as a kid. The hair on my head turned a golden blonde as I got older, but my eyelashes never changed. That means that if I skip mascara, I look like I don’t have any eyelashes. So I’d have to say mascara! But if sunscreen counts, I’d put that ahead of mascara. I’m fair-skinned and wear sunscreen on my face year-round.

Do you have any nicknames from friends and family? What are they? My husband calls me “Shus.” It started when we met in high school, and it has to do with all of my random (mostly running and soccer-related) foot and ankle problems, but I can’t explain the weird spelling.

Why did you start your blog? I started writing my first blog, Transmissions, in January 2007, not long after we learned that my little sister, Taylor, has Batten disease. I write to share our personal journey and fight but also to raise awareness of Batten and all rare diseases, which affect 30 million people in the United States and 350 million people worldwide. In March 2009, I retired Transmissions and launched Write the Happy Ending. I never took a break from writing; I just took a fork in the road, and my blog grew and changed over time as our journey progressed. Transmissions served as the official blog for Taylor’s Tale, the non-profit organization founded in Taylor’s honor, and Write the Happy Ending replaced it.

Shoes or purses? Shoes – but running shoes and flip-flops, not trendy designer shoes. In fact, I hate buying regular shoes, because I have bad ankles, bunions and narrow heels, so shopping for cute shoes is usually a miserable experience for me. But I have a thing for buying running shoes. At any given time, I have no less than three pairs of top-end running shoes that I wear on a regular basis. And my sports medicine doctor cringes every time I come to an appointment in flip-flops, but I swear by them. The way I see it, they’re better than heels! I love my Brooks Glycerin running shoes. They cost a pretty penny, but they keep my feet (mostly) happy!

Describe your perfect day from start to finish. Sleeping till 8. No earlier, and no later. Going out for brunch, preferably stuffed French toast and fresh fruit. Going on a long run, i.e. eight miles or longer, under a perfect, blue sky. Reading a good book. Spending a laid-back evening at home with family and friends. Snuggling with my dog, Daisy, a forever-young Westie. I’m a pretty simple creature. I’d love to find myself in some amazing destination every day, but deep down, it really doesn’t take that much to make me happy.

Who do you look to for style inspiration and advice? My mom, hands down. She is beautiful on the inside and out. I still take her shopping with me for everything from clothes and shoes to furniture, and I look to her for inspiration and advice on a lot more than fashion and style.

What are you too afraid to pursue right now, whether in your dreams, work or relationships? Having kids. I have my dreams figured out, and I’m not afraid to go after them; for me, it’s just a matter of finding time for all of them. I’ve been married for seven years, and we want to have kids, but I want to be in a place where I know I won’t have regrets or wish I’d done X, Y or Z before we went down that road. And when I have kids, I want to be right where they are.

Following are the 10 blogs I’m nominating for the Sunshine Award:

Here are the 10 questions I’m asking my nominees to answer:

If you could have one special power, what would it be?
If you could go anywhere in the world tomorrow, where would you go?
What did you want to be “when you grew up?”
What is your favorite song to run or exercise to?
Cake or pie? What kind?
What is something crazy or wild most of your friends don’t know about you?
What keeps you up at night?
Who is your hero?
What’s the first thing that comes to mind when you hear “rare disease?”
What do you want to be remembered for?

Thanks for reading! I hope you learned something interesting about me. Please check out some of my nominees’ blogs!

Blind Training with a Pinch Runner

Published: August 24, 2013 ~ 0

By Laura Edwards

Running isn’t much different from riding a bike without training wheels. Once you know how to put one foot in front of the other, you’ve basically got it. My mom says I look funny when I run. She may be right – the uneven wear on the soles of all of my running shoes betrays my weird gait – but it works. I still have blue ribbons I won for the 50-yard dash in elementary school, and for 20 years, no one could outrun me on a soccer field.

But running blind is a whole different story. In less than three months, I’ll run Charlotte’s Thunder Road Half Marathon blindfolded to honor my sister and support the fight against Batten disease. I started training with my sighted guide, Andrew Swistak, on June 5. Since then, I’ve fallen once, sprained both ankles and torn up a knee. That’s why, if I expect to cross the finish line in one piece on race day, I need as much practice as I can get.

Andrew and I can’t always get together, though. I’ve learned a lot of lessons doing this blindfolded running thing, one of which is that we’re both very busy people! So this morning, I informed my husband, John, that he had to pinch run for my sighted guide.

“That’s right, honey,” I said, handing him one end of the three-foot bungee cord that serves as my lifeline during my blind runs. “Be my eyes, and you won’t get any new medical bills.”

We hit a few rough patches where we couldn’t get our spacing right, and I clipped his feet. Running with my husband in broad daylight helped me understand just how in sync Andrew and I became after only a few runs in the dark. But we got the hang of it, and we even picked up speed at the end. Best of all, I didn’t fall or re-injure my ankles!

Near the end of our run, John pulled to a stop and told me to open my eyes (I didn’t have a blindfold today). Right when I did, a deer crossed the road in front of us. And then, just like that, it disappeared into the trees, and I closed my eyes and started running again.

Later, I thought about how Taylor would have missed that deer. I blind myself by choice for these runs and will blind myself for Thunder Road, but I can recover my vision at any time. Taylor doesn’t have that luxury; a monster called Batten disease stole her vision and a lot of other precious things from her.

And that’s why I run.

I will run the Thunder Road Half Marathon blindfolded to support gene therapy co-funded by Taylor’s Tale at the University of North Carolina Gene Therapy Center. Donations to this cause are 100 percent tax-deductible. To support my run and our fight to develop treatments for Batten disease and other genetic diseases, click here.

Join the Taylor’s Tale team at Thunder Road! Click here to register for the marathon, half marathon or 5K. On the second page of registration, under “Event Groups/Teams,” select “Taylor’s Tale” from the list under “Choose an Existing Group.” Run for us to help raise awareness on race day. Stay tuned for more details, including special shirts for team members and an informal post-race event!

Taylor’s Story Featured in Friday FITspiration Series

Published: August 23, 2013 ~ 0

By Laura Edwards

Head over to www.runladylike.com, where Jesica – an ordinary runner on a mission to find her extraordinary – shares her “uncensored and often unladylike adventures of running and triathlon training.” Today, she featured Taylor’s incredible story of courage and my plan to run a half marathon blindfolded in her honor on her “Friday FITspiration” series.

I’m grateful to Jesica for sharing our story in such a beautiful way. I’m grateful we connected, and I can’t wait to continue following her running adventures. Later today, she’ll start a journey of her own as she takes part in the famous Hood to Coast race in Oregon, a state that enchanted me with its beauty when I visited it during the week of Taylor’s surgery 11 months before that first 5K in 2008. Best of luck to Jesica, and happy trails to all of my running readers! Don’t forget, you can join the Taylor’s Tale team at Thunder Road on Nov. 16. We’d love to have you!

Read the story

Make a Wish

Published: August 21, 2013 ~ 4

By Laura Edwards

“You were born with the ability to change someone’s life, don’t waste it.” –unknown

We celebrated Taylor’s birthday this week; she turned 15. I was 15 the afternoon I came home from school, found Mom sitting cross-legged in the floor of her closet and learned she was pregnant. I still haven’t forgiven myself for leaving Mom alone in the closet with her news, sticking my headphones on my head and running out into a cold rain.

On Taylor’s 15th birthday, I put earbuds in my ears and ran 3.1 miles, or a 5K, in her honor.

I made it to dinner just in time to sit next to the guest of honor.

The fun continued after dinner.

While waiting for cake and presents, I got choked up reading birthday cards from Taylor’s friends at the Fletcher School, where she spent six amazing years.

Taylor’s friend, Paul, and Paul’s mom delivered the cards and cupcakes on the afternoon of Taylor’s birthday. Though Taylor spent her last day at Fletcher more than a year ago, the school still has a profound impact on her life, and ours, each and every day.

Taylor and Paul posed with the cupcakes before the sweet treats disappeared.

As the hour grew late, Mom carried out the cake, and Dad lit the candles. Mom produced a magic wand, wrapped an arm around my sister and helped her blow out the candles as we all sang the notes to “Happy Birthday.”

I always make a wish.

My Birthday Wish for Taylor

Published: August 18, 2013 ~ 3

By Laura Edwards

My sister, Taylor, will turn 15 on Monday. Taylor’s less than half my age, but she’s my hero. She’s done some pretty incredible things in her short life – like run two 5K races despite the fact that she’s blind and suffers from Batten disease, which is pretty much the worst disease on the face of the earth. That’s why, in three months, I’ll run Charlotte’s Thunder Road Half Marathon blindfolded to honor her and help find a treatment for Batten disease.

I’ve had the same birthday wish for Taylor every year since her diagnosis in 2006. I want a world where people like my sister can dream of growing old. I believe in that world. Tomorrow, in honor of my sister’s birthday, you can do one of three things to help Taylor’s Tale achieve that dream:

Sign up to run for Taylor at Thunder Road on Saturday, Nov. 16, and help us turn the course purple for Taylor’s Tale. You can run the marathon, half marathon or 5K. Note: blindfold not required. 🙂 Be sure to join our team during the registration process. On the second page of registration, under “Event Groups/Teams, select “Taylor’s Tale” from the list under “Choose an Existing Group.” Run for us to honor Taylor and help raise awareness of Batten disease on race day. In return, you’ll receive a moisture-wicking team shirt and an invitation to an optional post-race get-together. Stay tuned for more details! Click here to register now.

Make a gift to Taylor’s Tale in honor of Taylor’s birthday and help support our fight against Batten disease and other rare and genetic diseases. All donations are 100 percent tax-deductible. We fund research that has the potential to lead to treatments for human beings. We’ve supported work at top institutions in the United States and Europe. Today, we’re co-funding work at the University of North Carolina that could lead to life-saving gene therapy for Batten disease and many other genetic diseases. To make a donation, click here.

Run 3.1 miles – or a 5K – for Taylor on her birthday, Aug. 19. Visit our Facebook page and share a post about your run. Be creative – share a photo or a description of your run, or just tell us that you did it! You can also connect with us on Twitter. Share your run with us on Facebook and Twitter.

Thank you for helping us write the happy ending to Taylor’s Tale!

Blood, Sweat, No Tears

Published: August 16, 2013 ~ 4

By Laura Edwards

When I set my sights on running a half marathon blindfolded to honor my little sister and support the fight against Batten disease, most people called me dedicated. Some people called me crazy.

My friend and sighted guide, Andrew, talked to fellow runners before we began training together in early June. Friends told him to be prepared for falls. It’s not easy for someone with two functioning eyes to learn to function as a blind person, and it’s even harder for a sighted person in a blindfold to learn to run at a fast clip while tethered to another person.

But through seven training runs, I didn’t fall. In fact, after a few shaky minutes on a middle school track near our neighborhood, we learned to navigate speed bumps, hills, 90-degree turns, cul-de-sacs, parked cars and cars with drivers behind the wheel. I twisted my left ankle the first night when I got a little cocky and tried to jump a curb, but I kept my balance, and I kept on running.

So that track record over the course of seven runs pretty much makes me the master of the blindfolded running universe, right?

WRONG.

A few minutes into our run last night – our first in three weeks after my sports medicine doctor mandated time off for my still-ailing left ankle – the high-cushioned Brooks shoe on my right foot caught a sliver of asphalt on the side of the road that sat a centimeter higher than the curb. My good ankle went right, then left, then right again. In my world of darkness, I felt my ankle go but didn’t have any idea what sat in my path. My body crashed into the black void in front of me as my ankle gave out. I didn’t have time to rip off the blindfold, so instinct took over, and I threw out my right hand – the hand on the side of the curb that took my ankle.

A millisecond later, Andrew helped me up from my sprawled position on the side of the dark street. I still had the blindfold on, but I already felt warm blood trickling down my left knee, and my right palm burned.

I had a gaping hole in my left knee where skin used to be. I scraped up my right knee, too. My right wrist hurt from breaking my fall. The blood trickled down my left leg, almost to my shoe. I yanked my blindfold the rest of the way over my ponytail and made a makeshift tourniquet. But I didn’t tie it over the wound; instead, I tied it around my ankle to protect my shoe. Brooks Glycerins cost $150, and mine only have 100 miles on them! Andrew got a good laugh out of that as he helped me back to my house, where I washed the asphalt out of my wound and…got a fresh blindfold.

We ran close to 0.3 miles before my fall. After I cleaned up, we ran another 2.8 for a total of 3.1, or a 5K. When Andrew delivered me back to my house for the second time, I remembered how, when Taylor ran her first 5K race in 2008, she fell and scraped up her knees, but when her running buddy asked her if she wanted to pull out, she said no, she wanted to cross that finish line. And that’s what she did.

I already had a broken body when I started this gig. I might have a few more broken pieces before I get through. But I’ll cross that finish line on Nov. 16 for my sister.

The World’s Third-Most Populous Nation

Published: August 8, 2013 ~ 1

By Laura Edwards

Thirty million Americans have a rare disease. Globally, if all of the people affected by a rare disease lived in one country, they would make up the world’s third-most populous nation. And according to the National Institutes of Health, half of all people with a rare disease are children.

These are serious numbers. Rare diseases are real. They don’t just strike anonymous people you read about in magazines or see on TV. They strike your own family members and friends. Ten percent of Americans have a rare disease. If you have 30 classmates, three of them have a rare disease. If you work at a company with 1,000 employees, 100 of them suffer from a rare disease.

I have one sister – out of all the people in the world, my closest genetic match. I don’t have a rare disease. But Taylor does. She has a fatal disease without a known cure or even a single FDA-approved drug treatment.

It’s tough to describe the devastation of Batten disease in a paragraph. It causes blindness and seizures. Kids like Taylor lose their speech and their ability to walk. They end up with feeding tubes. We call Batten disease a “brain” disease, but it ravages the whole body. Calling it a brain disease is like letting it off easy.

But for now, all we can do is throw pebbles at the monster wreaking havoc on my sister’s body. She takes a drug to help prevent seizures, plus a million pills off-label. She does physical therapy like a champ. And Batten disease marches on.

Taylor’s closest to my heart, but her story’s far from unique. When it comes to rare diseases, ineffective and/or temporary solutions for the symptoms are the norm, not the exception. This is an expensive approach that offers little quality of life or long-term hope for the millions of people like my sister. It is a public health problem, and we can all be part of the answer.

Initiatives like the Breakthrough Therapy Designation and Accelerated Approval for Rare Diseases can help pave the way to a better future for the rare disease community. At a recent briefing about FDA approval pathways, a cystic fibrosis patient talked about how a drug called Kalydeco, one of the first Breakthrough Therapies to market, has changed his life. The patient said that the drug, which treats the underlying effect of the disease and not just the symptoms, “profoundly changed his life because for the first time, he felt that he could look forward to becoming a grandparent one day, whereas the average lifespan for CF sufferers is 37.” (FasterCures, Aug. 6, 2013)

I’m reading “The Forever Fix,” Ricki Lewis’ book about gene therapy and the world of patients exploring the frontiers of medicine – our world. In the book, Corey Haas, born with a rare eye disease called Leber congenital amaurosis (LCA), receives gene therapy and sees bright sunlight and fireflies for the first time.

Back when Taylor could still share her hopes and dreams with me, she told me she wanted to drive a pink convertible like Sharpay from “High School Musical” and have a dog and go to college and get married.

I don’t know what tomorrow holds for my sister. But I know that I want to give people like her the opportunity to look forward to milestones. I want to give them the miracles of life, both great and small. I want them to be able to watch the sunrise and count the fireflies on a warm summer night.

Taylor’s Tale is a leader in the fight against rare diseases. Send us a note to ask how you can get involved.

Carrying the Torch

Published: August 7, 2013 ~ 0

By Laura Edwards

I’m past the halfway point of the two-week rehab period prescribed by my sports medicine doctor, and I’m ready to get back on the road for Taylor. I don’t have any swelling in my sprained ankle, and the pain is much better this week than last. I’ve practiced the art of icing with a frozen cup of water; I kick off my shoes to do this at the office at least once a day, so I’m grateful for understanding coworkers. Barring any new setbacks, I should be back in a blindfold by sometime next week, just in time for the three-month countdown to Thunder Road.

Meanwhile, my mom’s carrying the torch for both of us. I thought I’d be able to publish a new post for each of her training sessions, but I’d never sleep. By my count, Mom’s made it to the track or the treadmill three times since her coach went down last week. She even went to Run For Your Life and bought new running shoes! Last night, I joined her at the Y near our house and lifted weights while she ran laps. Once, I crept to the corner of the stretching area with my phone and hid behind a weight machine until she came down the straightaway. I jumped out just in time to capture a photo of her. Mom didn’t stop, but the next time she came around, she tried to sneak a peek at my camera roll and get me to agree to approval rights.

Mom will be ready for Nov. 16, and so will I. You can join us and help save kids like Taylor. Just visit the Thunder Road website to sign up for the 5K, half marathon or marathon. If you run for the Taylor’s Tale team (available in the list of groups/teams), we’ll provide a moisture-wicking shirt and a fun post-race get-together. More details to come! In the meantime, please consider supporting our cause with a donation (see how below). All gifts are 100 percent tax-deductible and will support gene therapy at the University of North Carolina.

See you on the road…soon!

Someone has to Run for T

Published: July 30, 2013 ~ 2

By Laura Edwards

I run races year-round. Twenty years on the soccer field did a lot of damage, and I deal with injuries all the time. But on Nov. 16, I’ll run the most important race of my life, and I’m not taking any chances. Early that morning, I’ll pull a blindfold over my eyes and honor the five-year anniversary of my little sister’s first 5K at Charlotte’s Thunder Road Half Marathon. So this morning – the start of my third day with an obvious limp – I took my balky ankle to see my sports medicine doctor for an exam and X-rays.

The good news is that I don’t have any broken bones, and the weird stuff my doctor saw was already there on an X-ray from 2010 (which doesn’t say much for my long-term joint health but bodes well, I suppose, for THIS race). I went home with a prescription for two weeks’ off from weight-bearing activities, running included, and frequent icing.

I’m one of the world’s worst patients, because I can’t stand to sit still. But this time, I’ll listen. I’m on a mission, and I won’t do anything to threaten it.

After my appointment, I sent a message to my mom, who has never run a race of any distance but will run the Thunder Road 5K for Taylor’s Tale. I promised to coach her to her goal of running 3.1 miles this fall, and in my message, I offered to meet her at the indoor track tonight to lift weights and provide instruction from the sideline.

Nine minutes later, she responded:

“On the treadmill right now. Someone has to run for T!”

Mom on treadmill

What does a go-getter like my mom need with a gimpy coach like me, anyway? Sans instruction, Mom logged 30 minutes on the treadmill, alternating two minutes of walking with three minutes of running at 5.2 miles per hour. One week ago tonight, Mom ran for the first time; as she took her first strides, she told me she didn’t know if she could run 3.1 miles without stopping. When she hits the open road on race day and breathes in the clear, cool November air, she won’t remember saying those words.

Besides, she didn’t really mean them. Because she’s my mom. And my mom ALWAYS believes.

I believe, too. I believe in my mom; I believe that my ankle will heal; I believe in Taylor’s courage; I believe that we can achieve our dream.

You can join my mom, my sighted guide and me on the Taylor’s Tale team at the Thunder Road races on Nov. 16. Scroll down to learn how, and stay tuned for more details!

I will run the Thunder Road Half Marathon blindfolded to support gene therapy co-funded by Taylor’s Tale at the University of North Carolina Gene Therapy Center. Donations to this cause are 100 percent tax-deductible. To support my run and our fight to develop treatments for Batten disease and other genetic diseases, click here.