Ady was diagnosed with A.L.S. in 2016, when Carl was 4 months old. In 2019, he underwent a tracheotomy, which inserted a tube into his windpipe so that a ventilator could breathe for him.

For Ady, just getting up has become a chore harder than most of us could imagine. In 2016, Ady was diagnosed with ALS. Even as the disease has robbed him of movement and even the capacity to speak ...

Ady Barkan, Influential ALS Advocate and Subject in ‘Not Going Quietly,’ Dies at 39. Barkan, who was diagnosed with ALS in 2016, advocated for the expansion of healthcare rights.

Ady Barkan, an activist for single-payer healthcare and a patient in the late stages of ALS, has opened up the first Congressional hearing on “Medicare for All” with a passionate speech urging ...