Columns

Seeking patience in the fight against Batten disease

More than 17 years have passed since the sweltering July day of my sister’s CLN1 disease diagnosis, so please forgive me for what I’m about to say: I’m losing patience in the fight against Batten disease. I’m a distance runner with more than 40 half-marathons to my credit.

Honoring my sister, who taught me how to persevere

In January 2022, I had major surgery on my left ankle. Afterward, I spent the better part of a year relearning the simplest mechanics of walking and, later, running — the sport that saved my life when my little sister was dying from CLN1 disease (Batten disease). That’s why…