National Running Day 2015: Looking Back, and Ahead

Published: June 3, 2015  ~   0
By Laura Edwards

Today is National Running Day, a “coast-to-coast celebration of running.” On this day last June, I put on a blindfold and ran an unofficial 5K to honor my sister, Taylor. I cherish my vision; blindness is one of the many terrible things about Batten disease. But there is something magical about running blind for my sister that I’ve never quite been able to describe.

That blind run on neighborhood streets and a school track was the first time I’d run in real darkness – the kind of darkness that forces you to trust yourself and your guide and a higher power – since running Charlotte’s Thunder Road Half Marathon blindfolded in November 2013. continue reading →

The Longest Love Letter

Published: May 31, 2015  ~   2
By Laura Edwards

In July 2014, I began writing a long love letter to my sister, Taylor, almost eight years to the day after she was diagnosed with infantile Batten disease. The memoir is a story of love, loss and survival. It’s a story of what it means to believe. continue reading →

“Running” for Taylor in 50 States: North Dakota

Published: May 9, 2015  ~   1
By Laura 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.

On National Running Day 2014, I shared my plan to run 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.

Eight months ago, I signed up to run the Fargo Half Marathon, making North Dakota my seventh state. I suffered a stress fracture in my foot while running the Charlottesville Half Marathon in Virginia, state number six, on Easter Weekend. continue reading →

Running for Taylor: A Change of Plans

Published: May 2, 2015  ~   2
By Laura Edwards

Eight months ago, I registered to run the Fargo Half Marathon on May 9 – the seventh leg of my 50-state quest to honor my sister Taylor, fight Batten disease and support the millions of people suffering from a rare disease.

There’s been a change of plans. continue reading →

Running for Taylor: From the Other Side

Published: April 18, 2015  ~   2
By Laura Edwards

On a cool morning in Chapel Hill, North Carolina last April, I arrived on the UNC campus for my fifth straight Tar Heel 10 Miler. I was the healthiest and fittest I’d ever been, and I was coming off a 1:17 PR for the 10-mile distance. I didn’t match my PR that day, but Team Taylor’s Tale ran well for the fight against Batten disease.

Sometimes it seems as if I’m always hurt, but I’ve never missed a race due to injury. Until today. continue reading →

Running for Taylor in 50 States: Virginia

Published: April 5, 2015  ~   7
By Laura 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.

On National Running Day 2014, I shared my plan to run 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.

On Good Friday, John and I drove to Charlottesville, Virginia for state number six and the Charlottesville Half Marathon and 8K. continue reading →

The Cost of Rare Disease

Published: March 29, 2015  ~   0
By Laura Edwards

My family has been fighting Batten disease for many years. Once upon a time, my sister Taylor earned straight As in school and sang the words to all the songs she heard on the radio. She insisted on joining the Girls on the Run program at her school, even though she’d recently lost her vision. She ran two 5K races with her team.

Today Taylor is totally blind, unable to speak, learn or walk, suffers from seizures, and has a feeding tube. Batten disease stole my sister’s childhood. Now it’s stealing her life. Other lives, too, are being changed by Taylor’s illness – those of her family, friends and all who love and care for her.

This is the human cost of rare disease. continue reading →

Run the Creek for Batten Disease

Published: March 15, 2015  ~   2
By Laura Edwards

Spring race season is here; I’m diving in headfirst, with four races (two of them out-of-state) in the next eight weeks. Next Saturday, March 21, I’ll be at Charlotte’s Run the Creek 5K to run in honor of my sister Taylor as well as Brandon and Jeremy Hawkins, local kids and brothers both battling Batten disease.

We connected with the Hawkins family shortly after Taylor’s diagnosis in the summer of 2006; in fact, Brandon and Taylor went to the same astute pediatric neurologist. continue reading →

Running for Taylor in 50 States: Texas

Published: February 28, 2015  ~   2
By Laura 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.

On National Running Day 2014, I shared my plan to run 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.

Yesterday morning, I flew to Texas for state number five and the Woodlands Half Marathon, the hometown race of local hero Will Herndon. continue reading →