I am Robert Demanett
living with ALS
Kansas
I feel I have been chosen to fight for this cause with whatever I can do for as long as I can, whether that be to educate as many people as I can or to raise as much money as I can for research.
My name is Robert Demanett. I was diagnosed with ALS November of 2020. I honestly didn’t know much about the disease until then. I am 64 years old and have 3 children and 8 grandchildren. I feel I have been chosen to fight for this cause with whatever I can do for as long as I can, whether that be to educate as many people as I can or to raise as much money as I can for research. I am currently in the Healey platform trial until probably the end of November. Hopefully some good will come to the ALS community from this research. We need to get awareness to the public about this disease to pressure the FDA to fast track some of the good drugs or compounds that are out there already.
