Author Archives: Laura King Edwards

What Can COVID-19 Teach Us About Batten Disease?

Can you remember a stranger year than 2020? I was a college sophomore on 9/11, but while that tragedy mostly united Americans, the COVID-19 pandemic and growing racial tensions have proved divisive. And while neither of these crises directly relates to rare disease, I can’t help…

Batten Disease: Life, Interrupted

The message landed in my inbox just before lunch on Day 61 of the quarantine. I was working from home while making lunch for my 1-year-old son, juggling content strategy with clementines. Shuttling between my makeshift standing desk and Jack’s already messy highchair, I glanced down at my phone quickly,…

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…