One of my cousins, a guy I really grew up with, died of this terrible disease.
We played everything together, from Little League baseball through high school football, but as adults with our own families, we grew apart, both going our own ways. In 2000 one of our old aunties made me aware of what was going on and it happened that I was doing a lot of traveling for work and a fifty mile detour would bring me through town, so I got to stop and see Cuz as often as possible.
He died in '04.
I hold on to the last smile and the laughter in his eyes when I said, "Hey Cuz, who ever thought we'd make sixty."
They'll get nothing from me...
I’m sorry that your cousin died of this awful disease. My husband’s uncle died of ALS decades ago. There are some hopeful signs of progress in fighting ALS, but often these big charities are not the groups paying for it. Many of them just feather their own nests and print pamphlets.