ALS is the cruelest disease. It robs its victims of every function, sometimes slowly, sometimes with astonishing speed, so when Adam was diagnosed with ALS in September 2019 it seemed impossible. How could the guy at the center of so many people's lives be anything less than "there" for all of us, all of the time, whenever and forever? That's what Adam is for everyone who knows and loves him.
Adam's particular form of ALS is moving at warp speed, driven by an inheritable gene mutation called TDP-43. He is facing it with incredible inner strength. He is using every bit of his diminishing energy to take care of "business" – the business he built, the business of caring for family and friends, and the business of being the uncontested world's best dad and husband.
It is hard to summon hope in the face of ALS.
But we can take inspiration from Adam's strength, and we can give some hope to others. We can fund a research grant in Adam's name directed to TDP-43 to develop a treatment to slow its progress - and perhaps eventually stop ALS in its tracks. Research teams around the world regularly apply for grants from the ALS Association, including for TDP-43, for which there is currently NO approved treatment.
Our goal is $50,000. When we reach it, the ALS Association will name the Adam C. Eidelberg Research Grant for TDP-43 and award it through their rigorous competitive process. Our job is to raise the money.
We want to reach our goal AND be the #1 fundraising team in New York City at the May 2nd 2020 New York Walk to Defeat ALS. We want Adam to know there's hope for everyone who is at risk from this terrible disease in the future. It's a great way for us to be there for him.
