Just Showing Up Is an Accomplishment

Just Showing Up Is an Accomplishment

Years before my husband was diagnosed with ALS, I coordinated a tutoring program in Milwaukee. Many of the children and teens I worked with lived with stress and instability in their homes and neighborhoods. For some kids, just consistently showing up to school and the tutoring program was an accomplishment…

Is It a Jinx or a Sphinx?

“You don’t tug on Superman’s cape, You don’t spit into the wind, You don’t pull the mask off the old Lone Ranger, And you don’t mess around with Jim.” Based on recent events, I might add…

New Streaming Channel Showcases Rare Disease Films

When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated for May, its organizers set out to find a new way to bring the films to an audience.  Co-founders Daniel DeFabio and Bo Bigelow, who are both fathers of children with…

Train Your Eyes to Find the Light

Weeks after my husband’s ALS diagnosis, we were still in shock, but we mustered ourselves for a family outing on my 33rd birthday. We planned the day around our baby’s nap schedule. With only one weak arm, my husband, Todd, drove me, our 4-year-old daughter, and 11-month-old son to the…