Johnny was only 13 years old when #ALS stole his life. Because ALS has no cure, no treatment, never will Johnny go to high school, drive a car, dance at prom, attend college, have a job, a family, kids or a wife. The tragedy of juvenile ALS is shattering. This fight that we

My poor fam

It's possible I may NEVER quoting this The New York Times article "Visiting health workers who once seemed to take his impaired speech to mean he was stupid and hard of hearing — he is neither — now speak at normal volumes and touch him more carefully. nytimes.com/2024/08/14/hea… #ALS #AI

Guess what? Tonight at 6pm CT/7pm ET, our co-founders, Brian Wallach and Sandra Abrevaya, will take the stage at the Democratic National Convention to represent I AM ALS and our amazing community of advocates! Be sure to tune in at DemConvention.com!

Insurance will pay for Mr. Harrell’s caregiving needs only if he goes on hospice care, or stops working & becomes eligible for Medicaid, Ms. Saxon said, a situation that, she added, drives others with #ALS to give up trying to extend their lives. -The New York Times nytimes.com/2024/08/14/hea…

Only 15 mins away! #PVASummit #Mappers Pat Dolan

Amazing how the entire auditorium goes from gasping and excited chatter to complete silence when he raises a bird up #kidsGotTalent #birding Audubon Society

Elephants know the importance of a good #caregiver. This also resembles the scene in our house when Mom arrives, but instead of elephants, it's cats.

Before it gets too cold (if you are not in the socal inferno), be sure to #icebucket it up to help put an end to brutal #ALS. Consider yourself nominated by me to take the challenge if you watch me dump ice on my head. #icebucketchallenge #youAreNext I AM ALS

Map of evacuation zones: app.watchduty.org/i/33389

Live map of hot spots as "seen" via satellite (includes hurricane & air quality info). Made by amazing human Amanda Stanko experience.arcgis.com/experience/4e8… #maps #wildfires #wildfires #airQuality #esriMaps #arcgis

Such crushing news. We were so lucky we got to spend time with this smart, wonderful human changing the #ALS world for the better every day, Fred Fisher. From the archives of @ksbr885 in his honor, a radio show he did with us & Judy Ann Davila in Oct 2018: jazz885.org/collage/2018/1…

This is awesome!

I contacted Fred Fisher several times to publicly support #Nurown approval for #ALS. His commitment to #ALS patients and his compassion were evident in his responses. He never mentioned that he was battling cancer. It's a great loss for the #ALS community and humanity in

A note about Steve Gleason - "Live Impossible" Team Gleason

Boarded my flight home in my pjs and asked my seat mate to capture this magical moment. Thank you United Airlines for elevating this story of patient power and resilience No Ordinary Campaign ❤️❤️

Thanks to CBS Mornings and David Begnaud for their courage in giving us the time to share our story, spend some time together, and talk about our book, A Life Impossible. In the full interview, I added, "to be present with, and love all of Life's circumstance and all people, is

1.1 million! Thank you sponsors!

Just now seeing this wonderful guest The New York Times article that mentions the importance of Congress getting #HCBA passed instead of politicizing it. I'm in awe of Ady getting his #caregivers covered. So critical for survival & a pea of sanity. nytimes.com/2024/01/01/opi… UC Santa Barbara

I love this. #fortitude #family #affinity