Be A Hero, the health justice organisation that Barkan co-founded announced on Thursday: “It’s with deep sadness that we announce the death of our co-founder and co-executive director, Ady Barkan, at age 39 due to ALS-related complications.” Be A Hero called him a “brilliant strategist, incisive communicator, and powerful advocate.”
Barkan was diagnosed with ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig’s disease at the age of 32, in 2016, just four months after his son was born, Be A Hero’s site explained. “Confronting his own mortality, Ady decided to spend his remaining time fighting to transform America’s health care system so that it guarantees all of us the care and dignity we deserve and lifting up stories of incredible heroism in the face of injustice,” the website states.
His message to improve the healthcare system was perhaps even more powerful because of his weakening condition.
“That’s the paradox of my situation,” he told The New York Times in 2019. “As my voice has gotten weaker, more people have heard my message. As I lost the ability to walk, more people have followed in my footsteps.” He was arrested in the US Capitol more times than he could precisely remember, testified before Congress, launched the 2014 Fed Up campaign, and advocated for Medicare for all.
It’s with deep sadness that we announce the death of our co-founder and co-executive director, @AdyBarkan, at age 39 due to ALS-related complications.
Ady will continue to be at the heart of Be A Hero and what we do here for years to come. pic.twitter.com/Cd6sfxVW5l
— Be a Hero (@BeaHero) November 2, 2023
In 2019, Politico called him “the most powerful activist in America.”
Barkan’s wife Rachael King took to his X page to comment on the news: “I’m devastated to share the news that Ady has died from complications of ALS. You probably knew Ady as a healthcare activist. But more importantly he was a wonderful dad and my life partner for 18 years.”
“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,” she continued.
Hi all, this is Ady’s wife, Rachael. I’m devastated to share the news that Ady has died from complications of ALS. You probably knew Ady as a healthcare activist. But more importantly he was a wonderful dad and my life partner for 18 years. [1/4] pic.twitter.com/KZ8k73Gujp
— Ady Barkan (@AdyBarkan) November 2, 2023
A GoFundMe page, which has already garnered over $50,000, for Barkan said he “spent decades fighting alongside people across the country to create a more just nation.” He leaves behind his wife Rachael and their two children. “Ady never gave up, continuing his work with Be A Hero, the health justice organization he co-founded and co-led, until his last days,” the fundraiser states.