Ady Barkan, the Co-Founder of Be A Hero, died today from complications of amyotrophic lateral sclerosis (ALS), a progressive disease without a cure. He was 39 years old.

Ady was a brilliant strategist, an incisive communicator, and powerful advocate who, while fighting for his own access to health care following his ALS diagnosis in 2016, became a leader in the effort to save the Affordable Care Act so that tens of millions of people in this country could also get the health care they deserve.

Activist Ady Barkan

Ady was a life-long activist and movement lawyer. Before he co-founded Be A Hero in 2018, Ady spent years fighting to advance worker rights and economic justice at social justice organizations, including Make the Road New York and the Center for Popular Democracy, where he co-founded the Fed Up Campaign and Local Progress.

After his diagnosis, Ady chose to use the time he had left fighting to create a country where health care is treated as a human right. He knew he was building something that would outlast him, and his relentless campaigning made him one of the most prominent health care advocates in the nation. Ady testified before Congress at the first-ever Medicare for All hearing in 2019, interviewed the Democratic presidential candidates in 2020 to discuss health care in America, and spoke in prime-time at the Democratic National Convention. Up until his death, Ady spent his days working with the Be A Hero team of staff and volunteers to stop health insurance corporations from gouging Medicare and denying patients care, and fighting to make it possible for people with disabilities and older adults who need home and community-based services to get the care they need surrounded by the people they love. 

There was no denying Ady’s brilliance or his wit, but those who knew him also understood that Ady’s power was rooted most of all in his humanity. From powerful elected officials and celebrities, to friends, colleagues and caregivers, Ady connected with people through genuine curiosity about them and deep care for their lived experiences and their hopes for the future. This was the source of his magical ability to make so many people feel truly seen. 

Ady Barkan's Family

Above all, Ady adored his family. His love for Rachael King, his wife and partner of 18 years, was profound and palpable. They shared the kind of deep connection that most people only hope to find. And they built a beautiful life together. Their two children, Carl and Willow, were a source of constant joy for him. Rachael, Carl, and Willow were the center of Ady’s universe. He loved listening to music with Willow sitting on his lap, taking Carl to basketball practice and to UC Santa Barbara games, and evening conversations with Rachael. It was his immense love for Rachael, Carl, and Willow and his desire to continue to be a committed partner and father that animated his own fight for access to home care. 

Ady knew that the exceptional team of caregivers who were with him 24 hours a day, 365 days a year, made it possible for him to continue living as a husband and dad—and he never missed an opportunity to thank them. On Labor Day, he told his caregivers: 

“My whole life is only possible because of your care and your labor…Everything I have is only possible because of you: my work, which keeps me busy and gives me purpose; my relationship with Rachael, which is still strong and growing through all our challenges and moments over 18 years; and my ability to be a father to these two crazy, amazing, wonderful kids—Carl and Willow. None of this could happen without you.”

Ady Barkan's caregivers

Ady believed everyone deserves access to the health care they need to give them more days with the people they love, doing the things they love, and he devoted his final years to that work. In his activism and his humanity, Ady became a real-life hero to millions of people navigating their own health challenges and all the failures of America’s health care system that stood in the way of them getting the care they needed. He inspired many of us to join the fight for universal access to life-saving and life-giving health care. He forged deep relationships with movement leaders across the country, building power and winning political change to pave the way for a future where health care is treated as a right and patients are put above profit. 

The Be A Hero team shares in the profound grief of all who knew and loved Ady. We’ve always known we wouldn’t have enough time with him. While we don’t know how to imagine a world without him learning, strategizing, fighting, and laughing alongside us, we do know that through Be A Hero and the movement of patients we are building, Ady’s work will live on. 

Be a Hero team

If you’re wondering how you can help right now, here’s one way: a GoFundMe has been established by Ady’s close friends to provide financial support to Rachael, Carl, and Willow at this difficult time.