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. The public charity became a top supporter of infantile Batten disease research and today is known worldwide for its contributions to research, awareness and advocacy on behalf of the estimated one in 10 Americans with a rare disease.
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.
Even though creative writing is her first love, Laura has a successful career at Wray Ward, Charlotte’s leading creative marketing communications agency. A content lead, she ghostwrites the agency’s blog, develops written content, drives content strategy and provides public relations support to clients in varied industries. Previously, Laura spent eight years on the marketing team at 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.
Laura has written numerous articles for publications including The Charlotte Observer, SouthPark Magazine and Endurance Magazine. She authored 12 short stories that were published in two editions of “One Patient at a Time” by Novant Health. “The Trial,” an excerpt from Laura’s memoir, “Run to the Light,” will be published in Oracle Fine Arts Review in April 2016. The memoir also earned honors in The Writers’ Workshop of Asheville 25th annual Memoirs Contest. Laura has won 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 speaks frequently at events and for media stories on behalf of Taylor’s Tale. Since 2007 she has appeared in media ranging from local and statewide television to major print publications, including Runner’s World in 2014. A lifelong athlete, she 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 under two hours; in 2014 she finished the race in 1:44, her best time ever in 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. Laura has been interviewed by media outlets across the nation and gave the closing speech at Hawaii’s Kauai Marathon VIP dinner in 2015.
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 nine 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.
Laura’s nonfiction story “The Trial” was awarded Honorable Mention in our “On Courage” contest.
I write because: I can use my passion to make a difference in the world.
Something surprising I have learned about courage over the years is: kids can be the bravest people of all.
I feel most courageous when I am: sharing my sister’s story with a crowd. That’s when I find my inner extrovert.
Some Things You Might Find Interesting About Me
About “The Trial”
Time seems to stand still in Oregon, where the author’s family convenes at a Portland children’s hospital for eight days. The author’s younger sister, Taylor, suffers from Batten disease, a rare, fatal disorder with no known cure. The last of six children in a historic clinical trial, she is scheduled to receive a dangerous but hopeful stem cell transplant. Days before Taylor’s surgery, the family learns that one of the children in the trial has died, casting an ominous tone. But they understand they are fighting a monster and that a small chance is better than no chance at all. They push forward; Taylor’s head is shaved, and holes are drilled into her skull so a pediatric neurosurgeon can inject nearly a billion fetal neural stem cells into Taylor’s brain.
After a torturous wait, the author and her family visit Taylor in recovery. Despite the difficult surgery, Taylor shows her resiliency. The author knows the road will only get harder, yet she understands her sister will never stop fighting.