Finding new ways to help my ALS community
Even at 80, my advocacy efforts can still make a difference
ALS patient Brian Wallach and his wife, Sandra Abrevaya, have made a significant and positive impact on the ALS community via their heart-wrenching 2022 documentary, “For Love & Life: No Ordinary Campaign.”
In case you haven’t seen it yet, I won’t share much about the content. Suffice to say that Wallach demonstrates his will, drive, and indomitable spirit, while Abrevaya brings extraordinary enthusiasm, juxtaposed against sometimes unspeakable pain, and a conflicted, quiet resolve to fight for our community’s rights while battling for her husband’s life.
As the title suggests, theirs is indeed a campaign of love and life. After watching the documentary, I was uplifted and once again felt I probably have more to give. I immediately contacted my friend and staunch ALS advocate Michelle Lorenz, as well as my daughter, to share with them my buoyed spirit.
Although I’m much older than most patients, I got that familiar feeling again — the one that’s told me innumerable times that there’s something I can still do to help someone else. Renewed, refreshed, and rejuvenated, I reached out to a longtime friend who was diagnosed with ALS a few months ago but hasn’t shared his condition with others.
I’d initially decided not to encroach on his privacy, but after watching the movie, I just wanted to send him and his wife a message to let them know that my wife and I are willing to be their ALS handbook. In light of our 14-year journey, I’m sure we have some supplies and equipment they can use, as well as advice on how to adjust and make changes in their lives along the way.
While I wait for his response, I’ll continue to pray for him and think of other ways to help him.
The race continues
The Wallach family and many others across the nation have had to take on the fight of their lives at a very young age. They heard the odds of victory are zero, but they decided to try to beat the odds nevertheless.
Initially given six months to live, Wallach continues to use his talent and skill to spend whatever time he has left effecting real change for ALS patients. People like Peter Frates, Ady Barkan, Steve Gleason, and Wallach have taken the baton from their fellow travelers and continue to race toward the finish line.
Even though some of us are, as Gleason likes to say, years past our “expiration date,” there are so many things we can do, because there’s so much to do. Wallach and other victims you see in the documentary have taken the lead in various areas and work in the face of overwhelming odds.
I’m nearly 11 years past my expiration date and have done several things in service to our ALS community. But one of the most important was helping to contact U.S. senators to persuade them to support funding for ALS research and for the U.S. Food and Drug Administration to accelerate release of new ALS treatments. Again, you’ll see some of that in the movie.
So I guess I am up for another task, even at 80 years of age. I can’t promise anything except I’ll try to do whatever I can to contribute to the valiant efforts shown by so many families across the country. It’s worth the effort for me to hopefully see the halting of this disease, especially in young men and women.
Keep fighting, everyone. We can’t lose with the folks we use to fight ALS.
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.
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