The Long Sprint - a Column by Laura King Edwards

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Laura cofounded Taylor’s Tale, one of the leading forces in the fight against Batten disease. Her sister, Taylor, was diagnosed with CLN1 disease at age 7; Laura writes “The Long Sprint” to inform and inspire anyone affected by rare disease. She is a professional content writer and published author — her memoir, “Run to the Light,” hit shelves in 2018. She is also a TEDx speaker and prolific runner. Laura earned an English degree from the University of North Carolina at Chapel Hill. A native of Charlotte, she lives with her husband and son in Fort Mill, South Carolina.

Finding a Way to Embrace the Joy of the Season

I’ve always loved the Christmas season. But Christmas, like other holidays, can be hard because it delivers a stark reminder of what — and whom — we no longer have. And I can’t help but think about the fact that this will be my fifth Christmas without my sister.

How I Reclaim Anniversary Days From Batten Disease

My sister, Taylor, always loved All Hallows’ Eve. But the beginnings of blindness hampered Halloween fun almost a year before we knew she had CLN1 disease, or Batten disease. I remember that crisp, cool autumn night in 2005 almost like yesterday: Taylor often stumbled while trick-or-treating and occasionally…

6.2 Miles to Courage on Casco Bay

I didn’t have high expectations when I slipped into the crowd at the starting line of this month’s Beach to Beacon 10K race in Cape Elizabeth, Maine. After all, I hadn’t gone for a run in seven months following major ankle surgery. Instead, I spent most…

7 Ways My Sister, Taylor, Defied Batten Disease

The world expected little from my younger sister, Taylor. And why shouldn’t they? After all, her diagnosis of CLN1 disease (Batten disease) at the age of 7 defied dreams for her future. Science said that instead of living life to the fullest, she’d simply lose it. But Taylor…

Her Light Brightened the World

Equal parts beautiful and bold, my sister, Taylor, knew how to get what she wanted, whether through earnest effort or effortless charm. The youngest member of her family by 11 years and often the youngest student in her class, Taylor nevertheless wrapped everyone around her little finger and didn’t…