Columns

This will be my fourth Christmas without my sister. Taylor lost her life to CLN1 disease (Batten disease) in 2018, yet Mom still hangs her stocking from the mantle every Thanksgiving weekend. My son, Jack, keeps the spirit of Taylor’s beloved singing angels alive, carrying the haloed host everywhere…

I’ve run nearly 40 half marathons — two of them blindfolded — but zero marathons. This fact surprises a lot of people, but I know my own story all too well. I know that the only time I trained for a full marathon, my joints couldn’t take the high training…

On a cool morning in Wyoming’s Teton Range late last month, I laced up a pair of dusty, well-worn boots and ventured into a glacier-carved gorge called Death Canyon. Having left my 3-year-old son with my parents at our cabin in Jackson, I’d set my heart on attempting the toughest,…

U.S. distance runner Molly Seidel won a bronze medal in Tokyo this month, crossing the finish line of the women’s Olympic marathon third overall in just her third crack at the 26.2-mile race. Tears pricked the backs of my eyes as I watched the gutsy performance of…

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 lifesaving treatments. After all, CLN1 disease, or Batten disease, is…

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 big cities. I always played hard. And often, I played hurt.

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 races in nearly half of the 50 U.S. states. But why…

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 the 24th of 50 states in my nationwide quest to honor…

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 my parents that doctors couldn’t do anything to help the bright-eyed…

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 us struggling with anxiety and uncertainty as the coronavirus pandemic endures.