Columns

Focusing on Better Quality of Life in Batten Disease

Like life, Batten disease is a game of inches. Get approved for physical therapy? You may walk long after your eyes stop working. Get denied those services? You may stop walking long before modern medicine says you should. Consume the perfect cocktail of anti-seizure medications? You may just have a…

My Will Is Strong to Keep Fighting Like a Sister

I haven’t walked in 36 days, three hours, and 16 minutes. Not that I’m keeping count or anything. Since having major ankle surgery on Jan. 14, I’ve undergone a crash course in life without the gift of mobility. Though I’ve been injury-riddled since I was a 17-year-old soccer midfielder,…

The Gift of Mobility

For most of us, January means a new beginning. For me, January 2022 also means a new left ankle — a souvenir from over 40 half-marathons and a 25-year soccer career. And while I’m already dreaming about my next race, the looming surgery also has me thinking long and…

We Could All Stand to Be More Like Kids

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’m Redefining What Giving My Best Means

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…

Reaching for Life Atop the Great Divide

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,…

The Next Leg of the Journey

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…

Life: The Longest Race of All

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.

Why I Run to Fight Batten Disease

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…