New Streaming Channel Showcases Rare Disease Films

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…

Navigating an Uncertain (Lega) Sea

“The world will little note, nor long remember …”  These words of Abraham Lincoln were his prediction that the speech containing them would have no permanence. Ironically, the Gettysburg Address would become one of most enduring elements of Lincoln’s legacy.

Taming My Runaway Thinking

Racing thoughts, runaway thoughts. Whatever you call ’em, I caught ’em. Yup, a case of full-blown, out-of-control, runaway thoughts. I hadn’t had them for years — not since the day I was told I had ALS. And then, like most newly diagnosed patients, I spent weeks and months imagining the…