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
3 3 8 The National ALS Registry is in danger of being defunded! Use the following text to write to or call your representatives and let them know that you expect them to oppose this atrocious proposal (contact information here148). The Honorable [NAME] United States House of Representatives (or: United States Senate) United States Capitol … Continue reading Contact Your Representatives to Save the National ALS Registry!
Trump's new budget proposal calls for complete defunding of the ALS Registry, which will dramatically slow the research that I and thousands of other people with ALS are counting on to save our lives! This is a matter of life and death, not politics. My survival is not a partisan issue. I beg you to … Continue reading Concerns About President Trump’s Proposed Budget Cuts
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
Did someone say "movie night"? Grab some friends and a bucket of popcorn. End advocacy month by educating, inspiring, and entertaining your crew!
When I was thirteen, I bought a small, blue, canvas-bound book whose title, scrawled in loopy silver script, read, "The Interpretation of Dreams." I purchased it because every morning, I awoke with vivid memories of three, sometimes four, dreams. About half of them were nightmares, but they didn't trouble me as much as what I … Continue reading Three Dreams and A Dragon
1 The FDA approved the first new medication for ALS in 22 years! Radicava, which slows down progression dramatically - up to 33% - will be available in America in August. We can't stop now! Source: Make a Difference This May44
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
If my dream of collecting and expanding my best essays and turning them into a book ever becomes a reality, there are a few new topics I am dying to write about that are just too involved for my blog. I would devote a whole chapter to the ways ALS has changed my understanding of … Continue reading A Dream
How I Live Now: Life With ALS 