Roger Ames

Aug 10, 2024

76 years old. Composer. Married to Elizabeth. 3 children, two stepchildren, one grandson. Teacher, and teacher of teachers. 76 years old. Composer. Married to Elizabeth, who is disabled from Powassan, a tick bite disease. 3 children, two stepchildren, one grandson....

Genevieve Whiting

Aug 10, 2024

I am a family member, a friend, a doctor and now I’m an ALS advocate. Every Christmas, we celebrated at Uncle Howard’s house. We didn’t celebrate Christmas at my house so this was a treat. I loved playing ping pong in his basement. He was a tremendous, quick player....

David Doane

Aug 10, 2024

I work relentlessly promoting ALS legislation with New England and Maine legislators and developing a team of people with ALS to support these efforts. In the Spring of 2017, my wife Michelle and I retired from our healthcare jobs in Dallas Texas and relocated along...

Bruce Daman

Aug 10, 2024

Through the summer, as my physical abilities continued to deteriorate, a friend with ALS said it’s as if a thief comes every night and steals a little more of you. Living Your Best Life: 2020 – ALS, Covid and The Yellow Parakeet In May of 2019 a neurologist...

Mark Cardilli

Aug 10, 2024

People DON’T understand that we don’t have time on our side and we need solutions ASAP. I’ve been fighting this disease since July 2019. We need more people in the political sector fighting for us alongside the FDA. People DON’T understand that we...