Why a “Miracle” in Ohio isn’t the End of this Story

Published: May 3, 2016  ~   4
By Laura King Edwards

The tireless team at CureBatten is in the national news again, this time for funding the launch of a clinical trial at Nationwide Children’s Hospital in Columbus, Ohio.

My heart is full of hope for Charlotte and Gwenyth Gray, daughters of Hollywood film producer Gordon Gray and his wife, Kristen. I wish I could put into words how much I want this treatment to save their beautiful little girls, Charlotte and Gwenyth. I wish I could explain how much I want the work made possible by CureBatten to spark progress for other devastating neurological diseases, including the many forms of Batten disease that still do not have a treatment. continue reading →

Running for Taylor in 50 States: Alabama

Published: April 3, 2016  ~   2
By Laura King Edwards

When I crossed the finish line of Charlotte’s Thunder Road Half Marathon blindfolded in November 2013, I knew the race would be a tough act to follow. But I didn’t intend to stop running for my sister, Taylor, and our fight against Batten disease and other rare diseases. That’s why I’m running a race in all 50 states – a feat not as rare as running 13.1 miles blind but one that I hope will help me spread our story far and wide.

Last month I ran the Auburn Running Festival Half Marathon, marking state number 12 in my quest for 50. continue reading →

Battling Rare Disease Every Day of the Year

Published: February 29, 2016  ~   0
By Laura King Edwards

Today is Rare Disease Day, a worldwide movement to raise awareness about rare diseases and their impact on patients’ lives. The effort targets the general public but also decision-makers such as policy makers and health professionals and biotech industry leaders.

I worked on the marketing communications team for a large, integrated health system for eight years. Early in my career, my mentor taught me not to focus too much energy on health awareness months, weeks and days at the expense of more strategic efforts. She said only a few of these movements really resonate with the general public, like Wear Red Day (always the first Friday in February), Heart Month, Stroke Month and Breast Cancer Awareness Month. continue reading →

Running for Taylor in 50 States: Massachusetts 

Published: February 15, 2016  ~   2
By Laura King Edwards

When I crossed the finish line of Charlotte’s Thunder Road Half Marathon blindfolded in November 2013, I knew the race would be a tough act to follow. But I didn’t intend to stop running for my sister, Taylor, and our fight against Batten disease and other rare diseases. That’s why I’m running a race in all 50 states – a feat not as rare as running 13.1 miles blind but one that I hope will help me spread our story far and wide.

Martha’s Vineyard is a unique island, with beautiful beaches and oak forests and a scattering of towns. It’s a vacation favorite of movie stars and writers and politicians.

But most people visit the island when it’s warm. continue reading →

A Different Kind of Dream

Published: February 6, 2016  ~   2
By Laura King Edwards

My junior year of college at UNC, I took a course in children’s and young adult fiction writing. For one assignment, my classmates and I had to write the first chapter of a hypothetical young adult novel. We had the whole semester, but a week before the due date, I still didn’t have a shred of an idea in my head. Finally, I sat down at my desk nine hours before I’d have to slide my completed pages under the teacher’s office door.

While my roommates slept in our four-bedroom apartment, I invented a 17-year-old heroine, a Southerner struggling to adjust to her new home in snowy Vermont. I gave her a little brother who loved hot dogs and macaroni and a dad with kind eyes and a mother with an inoperable brain tumor. continue reading →

Nine Things I Learned from My Sister

Published: January 31, 2016  ~   4
By Laura King Edwards

Some days, it’s hard for me to believe that almost 10 years have passed since Taylor’s diagnosis. More often than not, though, I struggle to remember a world unmarred by Batten disease. But my little sister is a tough cookie, and she’s still fighting the monster. Along the way, she’s redefined “possible” and taught me a lot of what I know about the world.

Here are nine lessons I’ve learned from the sister I didn’t know I needed.  continue reading →

What I’d Buy if I Won Powerball

Published: January 14, 2016  ~   0
By Laura King Edwards

Tonight marks the drawing for the record-breaking, $1.5 billion Powerball lottery.

I don’t normally play the lottery, but when some of my coworkers decided to buy tickets together, I thought, why not? So I threw my $2 into the pool.

And that got me thinking: what would I buy if I won Powerball? continue reading →

Running for Taylor: 2015 in Pictures

Published: December 31, 2015  ~   2
By Laura King Edwards

When I set out to run a race in all 50 states to honor my sister and support one in 10 Americans suffering from a rare disease, I only wanted to build on the momentum of running 13.1 miles blindfolded, which I did at Charlotte’s Thunder Road Half Marathon in late 2013. Taylor’s story was too good, her courage too inspiring, and the success of the blind run too complete to call it quits.

I never imagined the ride would be quite like this.

As the year comes to a close, I’m taking a look back at an incredible 2015: nine races, seven states and enough memories to last a lifetime. continue reading →

Red, My Fortune Cookie

Published: December 23, 2015  ~   0
By Laura King Edwards

I treated myself to a manicure for Christmas on the way home from the office this afternoon. While I waited for the rich poinsettia red polish to dry, two new customers – a young woman in her 20s and a teenager who had to be her younger sister – searched for the perfect colors on the shelves in front of me.

I always get bored waiting for my nails to dry, and I found myself watching them out of the corner of my eye by the time they’d moved on from the solid reds to the sparkly pinks. continue reading →