Laura King Edwards has a lot going on. She’s a writer, a rare disease advocate and she does marketing at one of the biggest firms in Charlotte. But she’s also an accomplished runner (with the goal of running a race in all 50 states) and a sister on a mission: She co-founded a non-profit to help fight for her younger sister. But at the heart of it all, she says she’s a storyteller. In fact, her first book will be published next year, and she’s gearing up to give a TEDx Talk in just a few weeks. Get to know Laura King Edwards, today’s FACE of Charlotte.
How long have you lived in Charlotte?
I’m a Charlotte native. We do exist! In fact, I lived within five miles of SouthPark Mall until 2016, when my husband and I moved to Fort Mill.
What do you do in your day job?
By day, I’m a content lead at Wray Ward, one of the area’s leading creative marketing communications agencies. I write — a lot — and lead content strategy for my clients, most of which are in the home and building sector. But when people ask me what I do in casual conversation, I usually tell them I’m a storyteller. My business card even says it. Before I joined Wray Ward, I spent eight years on the marketing communications team at Novant Health. My healthcare experience really helped me become a better, more effective advocate in my work for Taylor’s Tale.
How did Taylor’s Tale get started? What is it?
My sister, Taylor, was diagnosed with infantile Batten disease in the summer of 2006, not long before her 8th birthday. I’d just gotten married and bought my first house, and the news shattered me at a time when life felt close to perfect. The day of the diagnosis, my mom vowed to fight it. But we were too shell-shocked to fight right away. Several months later, my late grandmother dragged Mom to the bookstore to buy a book called The Cure. It tells the story of one man, John Crowley, who bucked the odds and engineered a treatment for his kids suffering from Pompeii disease. If you’re familiar with the movie Extraordinary Measures starring Brendan Fraser and Harrison Ford, it’s based on that story. Anyway, Mom and a few friends pulled together a steering committee to raise money for research, and Mom gave a copy of The Cure to everyone at the first meeting. We raised $40,000 at our first event, and that’s when we knew maybe we had something. Today, Taylor’s Tale is the world’s leading charity in the fight against infantile Batten disease and a driving force in the rare disease advocacy space. We’re celebrating our 10th anniversary this year.
Tell us about your mission to run in every state. How is that going?
Taylor went blind not long after her diagnosis, but when Girls on the Run came to her school her fifth grade year, she joined the team and ran two 5Ks. Watching a 10-year-old kid with courage like that, I knew instantly that I wanted to run for her. On the fifth anniversary of Taylor’s first race, I ran the Thunder Road (now Charlotte) Half Marathon blindfolded. Running a race in every state is the next step in that incredible journey. This December, I’ll run in state number 19 — Delaware.
Your family has made a big impact in North Carolina when it comes to awareness and fundraising for rare diseases. How did that come about?
Well, I’m a storyteller, so I’ve always been driven to spread the word about people like Taylor. Statewide, we’ve really been able to make a lasting impact for all rare disease patients, which equals about 1 million people in North Carolina. I still remember piecing together a [legislative] bill with my mom in an empty conference room at my office one day over lunch. A few weeks later, the bill passed unanimously in the N.C. House, and shortly thereafter it passed unanimously in the N.C. Senate. Less than four months after the bill’s introduction, the governor signed it. Known today as Taylor’s Law, it established the nation’s first rare disease advisory council, housed within the UNC School of Medicine. My mom, Sharon, serves as the state-appointed patient advocate on the Council. She and the other members are working hard to address the needs of all rare disease patients.
What do you want people to know about your sister? How is she doing?
Today, I think it’s probably hard for people to imagine my sister as a healthy, thriving kid unless they knew her before she started to get really sick. She taught herself to read at age 3, sang like a rock star, had better dance moves than most teenagers and routinely got the best of our brother (11 years her senior). I wish everyone had a chance to know my sister when she was healthy. But even today, Taylor’s the bravest person I know. She lives in total darkness. She can’t walk or speak or swallow food. She has seizures. Physically, she’s a shell of the kid who once got straight A’s and ruled the dance floor at school dances. Despite all that, she still smiles and laughs. It’s hard for me to feel sorry for myself and our family’s situation when I watch how Taylor faces each day.
What have you learned from your sister?
More than anything, Taylor taught me how to believe. She never complained about the card she drew. Instead, she figured out how to run blind and read braille and navigate a middle school dance floor. I could be angry about a lot of things, and I often am. But I don’t let that anger consume me. Instead, I channel it into something productive. I’ve learned I have a lot to be grateful for, and that life is too short to be unhappy.
What is the gist of your Ted talk?
Rare disease affects all of us. I want people to recognize that rare disease is everywhere — striking one in 10 people — because we won’t beat it as long as we look the other way. But perhaps even more than that, I want people to believe that they can turn their own tragedies into opportunities — that overcoming obstacles is mostly about having the courage to look at them from a different perspective.
What’s it like to be a part of Ted talks? What are you most nervous about?
I’m thrilled to be a finalist for TEDxCharlotte. Growing up, I was the kid whose face turned beet red when the teacher called her name (even though I usually knew the answer). But when we founded Taylor’s Tale, I overcame my fear of public speaking pretty quickly. One of the many things this journey has taught me is that we can overcome just about any shortcoming if we have enough passion to succeed. So I guess I’m really not nervous about getting up on that stage; in fact, I love any spotlight that brings light to Batten disease. If anything, I’m anxious about delivering a talk that does my sister’s amazing story justice.
You’ve written a book too?!
I started writing short stories in preschool and always thought I’d write novels. In fact, I studied fiction writing in college and wrote most of a young adult novel before Taylor’s diagnosis stopped me in my tracks. About a year after I ran that half marathon blindfolded, the gears started turning. I wrote my memoir, Run to the Light, in a crazy 10-month span when I was also crisscrossing the country for races, helping run Taylor’s Tale and also working full-time. Run to the Light is my sister’s story, but I tell people that it’s really not about Batten disease or running. It’s about love, loss and what it means to believe.
How do you do it all?
Honestly? I have no idea. I stumble through this life just like everyone else. If anything, I think it’s passion that keeps me going. I’ve always been a passionate person, and I believe in my work so fully that some days, it’s as energizing as it is exhausting. I also married a saint. I couldn’t have written a book in 10 months while doing all of this stuff without John’s help. He cooked a lot of dinners and washed a lot of dishes those nights I locked myself in our home office for three hours, and he was always my first beta reader when I finished a chapter.
How is your husband a support system? How did you meet?
John and I met on the first day of 10th grade at South Meck High School, and we started dating when we were 17. He met Taylor the day my parents brought her home from the hospital. In addition to serving as a beta reader for book chapters and blog posts and everything in between, helping with chores and flying all over the country with me to run logistics (his words) at races, he’s also my best friend. And I could never face Batten disease alone.
What is your best piece of advice?
Focus on the good. Life is too short to live any other way.
Aside from faith, family and friends, what three things can’t you live without?
Running — it’s a big part of my mental as well as physical health; my dog — snuggling with a sweet ball of fur can make any bad day better; and mountains — I’m happiest on a backcountry trail where the air tastes clean and my iPhone doesn’t get a signal.
Thank you to Laura for your tireless efforts and for sharing a look into your life. And thank you to Piper Warlick Photography for the beautiful photos of Laura. To learn more about Taylor’s Tale, visit taylorstale.org, and to learn more about Laura’s upcoming Ted talk, visit ted.com.
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