I am David Doane
living with ALS
Maine
I work relentlessly promoting ALS legislation with New England and Maine legislators and developing a team of people with ALS to support these efforts.
In the Spring of 2017, my wife Michelle and I retired from our healthcare jobs in Dallas Texas and relocated along with our 8 horses to our dream farm in Bucksport, Maine. We spent that first year of retirement enjoying all Maine had to offer and set the farm up just as we wanted it. In late summer 2018 I developed a limp in my right leg, in December I developed a weakness in my right hand and my PCP referred me to a neurologist who later that month diagnosed me with ALS, this diagnosis was then confirmed in mid-January.
My progression was rapid from December through March and has since stabilized with little or no further progression.
ALS advocacy and research is now my passion. I work relentlessly promoting ALS legislation with New England and Maine legislators and developing a team of people with ALS to support these efforts. I have participated in 7 clinical studies (noninvasive), 1 clinical trial, 1 medical device study and numerous focus groups and surveys. I have been excluded from 7 clinical trials!
I am very active in the ALS community, participating on committees with ALSA, I AM ALS, NEALS Consortium, Everything ALS and the MGH Patient advisory. I will continue to work as long as I can for ALS and other rare diseases.
