representation

Improving ALS Representation in Movies: My Behind-the-Scenes Role

Ever since I was diagnosed with ALS in 2010, I’ve become sensitive to how ALS is represented in the movies. And I’ll admit to voicing my opinion about the topic in several of my past columns. So you can imagine my glee and pride when, six months…

Someone Thought Enough to Write About ALS, and It’s About Time

“The book I’m not reading is riveting The book I’m not reading keeps me up at night The book I’m not reading is better than TV Giving me insight.” These lyrics from “The Book I’m Not Reading,” by singer and songwriter Patty Larkin, vaguely describe a literary quest of…

ALS Recognition Is Growing in Hollywood

Everyone likes being noticed — for the right things, of course. I like it when others recognize my unique talents and skills or a job well done. I don’t like being noticed because I have to use a rollator to help me walk. Or, because I move more slowly than…