Running Towards Rare
The pop of the starter pistol shattered the damp air.
I felt the tug on the bungee cord.
It was time to go.
As I ran, I felt hairline cracks in the pavement and the crunch of the fallen leaves and the smoothness of painted traffic lines.
The world seemed silet except for the slap, slap of my laces against the top of my shoes.
The curved metal hook of the bungee cord felt clamy in my hand.
My running shoes and a trusted friend were taking me on a journey unlike any I’d ever expereienced.
Because I wasn’t just running: I was running blindfolded.
Rare diseased crashed into Laura’s life seven years before this run. Her sister, Taylor was diagnosed with Batten disease. It has no known cure. Batten disease is fatal.
Each of us here today carries at least three devastating rare disease mutations we could pass on to our children.
No one is immune to rare. Rare disease affects me. It affects you.
And by tackling rare disease, we can reduce the huge burden on families and our healthcare system and communities.
I ran blind to save kids like my sister. I ran blind to save myself. And suddenly, I saw everything.
Running blind taught me to see the world from a different angle. To see rare disease from a different angle. To see it for what it is – an issue that affects us all.
In 2015, Taylor’s Law established the nation’s first rare disease advisory council in North Carolina. In 2017, the FDA approved the first treatment for Batten, more than 100 years after an English doctor discovered the disease. Soon, kids like my sister will be treated with gene therapy in a clinical trial. Gene therapy attacks terrible diseases by targeting faulty genes and replacing them with a healthy copy. It could be a forever fix.
Sometimes, though, the hardest things we face run faster than we do.
My little sister won’d survive Batten disease. We’re too late.
But somebody will. Because we’re running toward rare. That? I can see.
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.