Ady Barkan, Subject of Documentary ‘Not Going Quietly' and ALS Advocate, Dies at 39
MSN

The median life expectancy of patients prognosed by forty years of age is about 6.5 years, thus Ady's survival was ordinary.

Ady Barkan - Wikipedia
His life was not however.

His website/advocacy center:
Be a Hero Fund

Ady Barkan, Subject of Documentary 'Not Going Quietly' and ALS Advocate, Dies at 39
MSN

The median life expectancy of patients prognosed by forty years of age is about 6.5 years, thus Ady's survival was ordinary, he deployed a tracheostomy among other medical interventions.

Ady Barkan - Wikipedia
Ady Barkan - Wikipedia
His life was not however.

His website/advocacy center:
Be a Hero Fund
Be a Hero Fund

and a few words from his M.D.
Activist Ady Barkan and Actor Bradley Whitford Work to Reform Health Care
https://tinyurl.com/ABbyMC

His documentary:
Not Going Quietly
Not Going Quietly - Wikipedia
https://tinyurl.com/AdyNGQ

His autobiography: "Eyes to the Wind: A Memoir of Love and Death, Hope and Resistance" (Atria Books, 2019)

These references are a mini bio of ALS patient Ady versus ALS . . . a very extensive non-profit campaign.

My first attempt was very poorly 'translated' from e-mail to bbs format (sorry, I don't know why it gets messed up sometimes).