Influential ALS Advocate Ady Barkan, Featured in 2021 Documentary ‘Not Going Quietly,’ Dies at 39

Ady Barkan, a lawyer and political advocate who rose to prominence after being diagnosed with terminal ALS, has died from complications of the disease, according to social media posts from his wife Rachael and his advocacy organization, Be A Hero. He was 39 years old.

His story was featured in the 2021 documentary “Not Going Quietly,” following him and his influential advocacy work, including when he testified before Congress.

“You probably knew Ady as a health care activist,” his wife wrote on X (formerly Twitter). “But more importantly he was a wonderful dad and my life partner for 18 years.”

She added, “Ady fought for the 24/7 care he needed to be home with us until the end of his life. It’s impossible to thank his incredible caregivers enough for their labor and care, which allowed us to live as a family through Ady’s health challenges. Everyone should have that chance.”

His wife concluded, “Thank you to everyone who has supported Ady and our family over the years — from the amazing caregivers who became family to us to the activists facing their own health challenges who joined the movement he was building @BeAHero.”

Barkan made headlines in 2017 when he confronted U.S. Sen. Jeff Flake on a plane about the senator’s upcoming vote on tax cuts, which would hurt programs that help those like Barkan who have the disease.

Barkan was diagnosed with ALS in 2016. His political advocacy work included looking to protect the Affordable Care Act to make sure that people would continue to have access to health care.

He co-founded the organization Be A Hero in 2018 and testified before Congress in 2019 at a Medicare for All hearing. Barkan also interviewed the Democratic presidential candidates in 2020 about health care and spoke at the Democratic National Convention.

Barkan was already an advocate before his diagnosis, working as a lawyer at several social justice organizations.

Barkan is survived by his wife Rachael and their two children.

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