The Long Sprint
— Laura King Edwards

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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.

So long to ‘The Long Sprint,’ but not my fight against Batten disease

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…

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Striking a Balanced View of Clinical Trials

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…

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3.1 Ways to Fight Your Rare Disease

My life changed forever 13 years ago. In the space of a few months, I started a new job, bought my first house, got married, and searched “neuronal ceroid lipofuscinosis” (Batten disease) for the first time. I’ll never forget that phone call: I was writing a press release at…

Columns

My Road to Big Victories for CLN1 Disease

With 350 million patients, rare diseases represent the largest disease community on the planet. In fact, if all rare disease patients lived in the same country, they would represent the world’s third-largest country, behind only China and India. Of course, with so many included conditions (more than 7,000 and counting),…