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.

Running to the Finish Line, for Taylor’s Sake

I miss my sister. Many people in the rare disease community are surprised, even shocked, to learn that I have a full-time job — which, along with my 16-month-old son and writing books and running races, rounds out my life outside of Batten disease. I worked that job from home…

Can Patients and Families Really Drive Therapy Development?

The therapy development process is a marathon, not a sprint. But unlike a marathon, the road any treatment must travel from the laboratory to the marketplace is filled with roadblocks. It’s often nonlinear, with starts and stops, backtracking and reworking. Because science, like life, can be unpredictable. The road to…

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…

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…

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),…