Speaker – Laura King Edwards

About Laura…

Laura King Edwards is a passionate rare disease advocate, award-winning writer and marketing professional. Following her sister’s Batten disease diagnosis, she co-founded Taylor’s Tale; she is the charity’s vice president and runs races nationwide to support the cause.

Oracle Fine Arts Review, Endurance Magazine, The Charlotte Observer and many others have published Laura’s work. Laura co-authored two editions of Novant Health’s One Patient at a Time and wrote a memoir, Run to the Light.

Laura is a member of the WNBA and a past member of the SCBWI, NC Writers Network and Charlotte Writers’ Club. She also served on the Board of Trustees at The Fletcher School.

By day, Laura is a content lead at Wray Ward, where she crafts compelling, effective content for leading brands. Previously, she worked in marketing at Novant Health.

Laura is a UNC-Chapel Hill graduate with a BA in English. She is a Charlotte native.

Learn more about Laura’s Talk…

Title: Running Toward Rare
Description: When doctors diagnosed my 7-year-old sister with a fatal rare disease, I helped kickstart a major effort to find a cure. The charity I co-founded achieved amazing things, but my sister kept getting sicker, and somewhere along the way, I lost my will to fight. This is the story of how I found the path forward and realized we can fix not one disease, but many diseases.
What would the news headline about your talk? One grieving sister wages a war against rare disease
What do you want people to learn from your talk? 1) One in 10 Americans, and 350 million people worldwide, suffer from one of 7,000 rare diseases. In many cases, these diseases have devastating consequences and zero approved treatments. They are an incredible burden on families, communities and our healthcare system. 2) Fixing all rare diseases might seem like an impossible challenge – a challenge I’ve faced for more than a decade as an advocate, non-profit leader and big sister. But if we’re brave enough to approach rare disease in a novel way, we can improve lives. Even save lives.
What action items do you want people to take away from your talk? Rare disease is everywhere. It affects us all. I hope my talk educates people on the far-reaching impact of rare disease and strategies to fix it. Most importantly, I hope it moves them to become part of the solution by supporting science and innovation or patients in their own community, or by simply having the courage to ask, What if? when faced with the world’s biggest problems.

Learn more about Laura…

Where is your hometown? Charlotte (born and raised)
What are your hobbies? 1) I’ve written and illustrated stories since before starting kindergarten, and I still do. I’m blessed to be able to make a living doing what I love. 2) Since I’m a writer, I spend a lot of time in front of my laptop. But I’m happiest under a blue sky, and I want to hike in every national park. I like to escape the crowds on remote backcountry trails, where the air tastes clean and my iPhone doesn’t get a signal. 3) I played soccer for more than 20 years. I hung up my cleats a few years ago, but I’m still active even when I can’t make it out to the parks. Today I run races – mostly half marathons – all over the country. 4) In my downtime, I love snuggling my dog, listening to music or reading a good book. I have a great family, and I married my best friend.
What are you passionate about? I’m a passionate person, so I try to approach almost everything in my life with a certain sense of passion. But I’m particularly driven when it comes to telling stories, seeing the world and spending time with the people I love.
What is the best compliment you’ve received? A lot of people tell me I’m a great big sister. I always thought my little sister was the best sister anyone could have, so I’m probably most proud of that.
What do you want to be remembered for? I want to be remembered as someone who wasn’t willing to take “no cure” for an answer – as someone who always kept running, no matter how much it hurt.
How do you push the boundaries? I give my best to everything that I do. And if I reach a particular milestone, I don’t stop. I’m always trying to write more effectively or run more quickly or love more deeply. Sometimes, I’m at my best when I force myself to overcome pain, whether emotional or physical.
What does your happy place look like? Almost any out-of-the-way hiking trail. But if I had to choose one place, I’d say Utah’s red rock canyons painted over a perfect blue sky.
What is one thing that you would like to share that isn’t commonly known about you? I’ve had brain surgery.

Thoughts on Charlotte…

What part of town do you live in? I moved to Fort Mill in 2016. Before that, I lived in the SouthPark area.
What draws you to Charlotte? I’m a Charlotte native, and my family and friends will always make this city feel like home. I love Charlotte’s close proximity to mountains and beaches and its temperate climate. I’m a writer and a closet artist, so I also appreciate Charlotte’s strong creative community.
Where do you see Charlotte in 5 years? I know Charlotte will only continue to grow, because it’s a great place to live. But growth brings change, and since I was born here in the early ‘80s, I’ve seen a lot of it. In five years, I don’t think Charlotte will look much like it does today. The apartment market is booming, old landmarks are disappearing, and it seems as if developers are scooping up every square acre of land. I’m kind of an old soul, and I hope we don’t forget to preserve some of the old Charlotte.

Our most important question…

What animal will most likely be our future overlords? My dog is a 14-pound fuzzball. She’s cute and knows it, and she gets away with murder. If an animal ever figures out how to rule the earth, it’ll probably be a lot like her.