This month marks 13 years since my sister’s diagnosis of CLN1 disease, or Batten disease. That means I’ve had 4,745 days — or 113,880 hours, or 6,832,800 minutes — to get used to the thought of outliving her, even though she came into the world on a warm August…
The Long Sprint
— Laura King Edwards
Laura King Edwards 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.
Featured Post
Since 2019, I’ve penned “The Long Sprint,” my Batten Disease News column dedicated to informing and inspiring people affected by rare disease. Now, nearly five years later, it’s time for me to say farewell. My sister, Taylor, was diagnosed with CLN1 disease (a form of Batten…
