Laura King Edwards is a writer, rare disease advocate and marketing professional.
Laura’s younger sister was diagnosed with a rare, fatal brain disorder called Batten disease in 2006. Refusing to accept the status quo, Laura became a passionate activist, co-founding a non-profit organization, Taylor’s Tale, at age 24.
Taylor’s Tale became a top supporter of infantile Batten disease research and today is known worldwide for its contributions to science, awareness and advocacy on behalf of the estimated one in 10 Americans with a rare disease. Laura serves as the charity’s vice president and has written the blog, Write the Happy Ending, since 2007.
A graduate of the University of North Carolina at Chapel Hill with a BA in English, Laura minored in creative writing (winning the William H. Hooks award for creative writing) and has wanted to be an author since she penned her first story before starting kindergarten. Writing is in her blood; Laura is a cousin of the late Reynolds Price, an American poet, novelist, dramatist, essayist and James B. Duke Professor of English at Duke University. Samuel Clemens, better known as Mark Twain, is on her family tree.
Publishing History and Awards
“Run to the Light” also earned honors in:
- Ink and Insights 2016 Nonfiction Contest
- The Writers’ Workshop of Asheville 25th annual Memoirs Contest
- The Writers’ Workshop of Asheville 2016 Hard Times Contest
- Tortoise and Finch Productions “On Courage” Nonfiction Contest
Laura’s writing has appeared in The Charlotte Observer, SouthPark Magazine, Endurance Magazine and many others. She authored 12 short stories that were published in two editions of “One Patient at a Time” by Novant Health.
She has won multiple Carolinas Healthcare Public Relations and Marketing Society awards for feature writing and a Charlotte Writers’ Club award for nonfiction writing. FasterCures and Global Genes, leading patient advocacy organizations, have recognized her personal blog.
Laura is a member of the Women’s National Book Association; she is a past member of the Society of Children’s Book Writers and Illustrators, North Carolina Writers’ Network and Charlotte Writers’ Club.
Even though creative writing is her first love, Laura has a successful career at Wray Ward, Charlotte’s leading creative marketing communications agency. As content lead, she develops written content (including the agency’s blog), leads content strategy and provides public relations support. Previously, Laura spent eight years on the marketing team at Novant Health, a large, integrated health system. There, she developed a keen understanding of complex medical information, mastered the ability to communicate it to technical and lay audiences, and filmed a commercial with Michael Jordan for the orthopedic hospital.
Rare Disease Advocacy
In 2015, Taylor’s Tale leaders successfully advocated for a North Carolina law (now Taylor’s Law) establishing the nation’s first rare disease advisory council. In 2016, Abeona Therapeutics announced the addition of a gene therapy treatment, developed at the University of North Carolina with the support of Taylor’s Tale, to its pipeline. A clinical trial for children with infantile Batten disease is expected to begin in the near future.
Laura speaks frequently at events and for media stories on behalf of Taylor’s Tale. She was a TEDxCharlotte 2017 speaker and has appeared in media outlets across the nation, including Runner’s World in 2014. She gave the closing speech at Hawaii’s Kauai Marathon VIP dinner in 2015.
A lifelong athlete, Laura began running in her sister’s honor when Taylor completed two 5K races after going blind. Laura ran Charlotte’s Thunder Road Half Marathon blindfolded in 2013, finishing in less than two hours; in 2014 she finished the race in 1:44, her personal record for a half marathon, which she got while running the last 1.25 miles blindfolded but not tethered to a guide. She is currently chasing a goal of completing a race in all 50 states to support Taylor’s Tale.
When she is not writing, running or fighting for the millions living with a rare disease, Laura is likely exploring trails in a national park with her high school sweetheart and now-husband of more than 10 years. But her most challenging and rewarding accomplishment is spending quality time with her little sister, listening to music together or taking her for walks, even though Taylor is now in a wheelchair.