Batten Disease Changed Our Halloweens Long Before COVID-19

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 squarely in the middle of a pandemic. Only the boldest costumed…

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…

For Many Rare Disease Families, Self-isolation Is Nothing New

We watched from the dock as sunlight danced on the lake’s surface — a balletic performance for a small but captive audience of one in the quiet cove. Though still a few hours shy of lunch, the day was already hot. We both wore bathing suits, but my sister, Taylor,…