One of the first things I did after José’s diagnosis in 2021 was start volunteering for I AM ALS. While I’m no longer active as a volunteer, I do my best to stay up to date with their core team and both of us lend our voices to the organization’s advocacy efforts when we can.
In 2022, we had the chance to screen an independent film which features the founders of I AM ALS (and Synapticure), Brian Wallach and his wife Sandra Abrevaya, along with other people living with ALS and their loved ones.
José wasn’t interested to see it, so I watched it alone.
In 2023, we had another opportunity to access the film. This time I managed to convince José to watch it with me. He thanked me.
Now that For Love & Life: No Ordinary Campaign is streaming on Amazon, you can watch it, too!
This isn’t a sad story.
It’s not only a story about ALS.
Sure, there are some powerful peeks behind the scenes of what it can be like to live with this disease. But more importantly, it shows the power of the human spirit and our ability to MAKE CHANGE even against the most daunting odds.
What the people featured in this film and other patient advocates are doing is improving the odds and forcing systems change not only for those affected by ALS but also for the wider circle of us touched by other neurodegenerative diseases like Parkinson’s, Huntington’s, Alzheimer’s, and MS.
Literally everyone reading this post will be affected or know someone who is diagnosed with one of these illnesses in their lifetime.
Please watch. Be inspired. Take action.
THAT was an outstanding film; I watched it from beginning to end. Faaaantastic to see all those human beings coming together to fight for release of helpful medicines in a timely manner.