3 9 Here's something to smile about! A big thank you to #TheALSAssociation for facilitating and helping fund this collaboration and countless other invaluable partnerships. In the shadow of Trump's attempt to defund the National ALS Registry, witnessing The ALS Association's commitment to streamlining research efforts to push us ever closer to a cure is … Continue reading “Extraordinary” Collaboration Brings Together Project MinE, Answer ALS and the New York Genome Center
7 5 8 8 9Dedicated to Dr. Goslin for giving me permission to believe, and my husband Evan, who shields me from the worst of the winter winds. I am a voracious reader. I always have been, thanks to my parents and grandparents, who planted books around my house in places I could reach even … Continue reading A Wild and Lonely Belief
4 Something about spending time on a covered porch always leads me reminiscing and daydreaming. As the rain clears to make room for the summer sun, I spend hours out there, watching my dogs play and letting my mind float on the afternoon breeze, I remember, and I plan. This beautiful weather makes me miss … Continue reading Summer Dreams
At the recommendation of ALS Worldwide 129147 and with the approval of my beloved neurologist, I have begun an unconventional course of medications. I use the word "unconventional" because some of the medicine is either not typically used in cases of ALS or is being used outside of the FDA approved dosing. Additionally, none of … Continue reading Rag Doll
How I Live Now: Life With ALS 