The Long Sprint
— Laura King Edwards

Doctors, scientists, and patient organizations like Taylor’s Tale — the nonprofit I co-founded to advance breakthrough treatments for Batten disease and advocate for life-changing public policies — invest significant time and resources into the hunt for…

I never ran track. Instead, I worked my legs on the soccer field, using my stamina to cover the pitch as a midfielder and my speed to chase down strikers as a sweeper. I played in backwater towns and…

I’ve written a Batten disease column crammed with running metaphors since 2019, and a nonprofit blog with much of the same for far longer. I’ve run two half-marathons blindfolded and more than 30 half-marathons and…

At the end of March, I ran a real race for the first time in 16 months, traveling to the “Horse Capital of the World” for Lexington, Kentucky’s RunTheBluegrass Half Marathon. The contest christened Kentucky as…

My sister, Taylor, was diagnosed with CLN1 disease on a hot summer day in 2006, during the “Dark Ages” of Batten disease research, before we knew much about symptom management. So, when the geneticist who confirmed the diagnosis told…

Batten disease took my sister from me, but it didn’t take her love for life. Now, more than two years after her untimely death at age 20, I think a lot about the lessons Taylor could teach those of…

This will be my last post of 2020. But instead of wailing that the new year can’t possibly get here soon enough, I want to end a tough year on a high note. To infuse these troubling times with…

Thanksgiving began as a simple gathering hundreds of years before the invention of football and shopping malls. For the Pilgrims, this special day was about giving thanks for the blessing of the harvest and the preceding year. In modern…

Trick-or-treating’s early history is shrouded in mystery, though a “Peanuts” comic strip immortalized the tradition in 1951. That means that this year may be the quietest for door-to-door activity in nearly three-quarters of a century, with Halloween falling…

We all wish we could relive experiences from our childhood — those fleeting moments that turn into minutes and hours and days faster than we can say graduation. My own daydreams often place me on a soccer field somewhere…

Last week, Taysha Gene Therapies announced the company has entered into license and inventory purchase agreements with Abeona Therapeutics for ABO-202, an adeno-associated virus (AAV) gene therapy for CLN1 disease (Batten disease). In the…

If she were still alive, my younger sister would have celebrated her 22nd birthday today. Instead, Taylor died from CLN1 disease (Batten disease) in September 2018, more than 12 years after her diagnosis. Long before I said goodbye to…