Ady Barkan, Influential ALS Advocate and Topic in ‘Not Going Quietly,’ Dies at 39

Ady Barkan, an legal professional and influential activist who used his years-long battle with amyotrophic lateral sclerosis to advance healthcare rights, has died. He was 39.

His spouse, Rachael Scarborough King, shared the information on X (previously Twitter) Wednesday that Barkan “died from issues of ALS.”

“You most likely knew Ady as a healthcare activist. However extra importantly he was a beautiful dad and my life accomplice for 18 years,” she wrote in an announcement. “Ady fought for the 24/7 care he wanted to be dwelling with us till the tip of his life. It’s not possible to thank his unimaginable caregivers sufficient for his or her labor and care, which allowed us to dwell as a household by Ady’s well being challenges. Everybody ought to have that likelihood.

Her assertion continued, “Thanks to everybody who has supported Ady and our household over time—from the wonderful caregivers who grew to become household to us to the activists going through their very own well being challenges who joined the motion he was constructing [Be A Hero].”

Barkan, who was recognized with ALS in 2016, used his personal combat for entry to healthcare to turn out to be a frontrunner within the effort to save lots of the Reasonably priced Care Act.

His story was additionally featured within the 2021 documentary Not Going Quietly, directed by Nicholas Bruckman. It adopted him by his progressive advocacy work as he launched into a nationwide marketing campaign for healthcare reform, together with when he testified earlier than Congress.

Barkan additionally made headlines when he confronted U.S. Sen. Jeff Flake on a aircraft in 2017, asking him to vote no on a tax invoice that will harm applications that assist folks like Barkan who’ve ALS.

In 2018, he co-founded the nonprofit Be A Hero, which works to increase entry to healthcare.

The group’s co-executive director Jamila Headley shared in an announcement on social media, “The Be A Hero group shared within the profound grief of all who knew and beloved Andy. We’ve all the time identified we wouldn’t have sufficient time with him. Whereas we don’t know the right way to think about a world with out him studying, strategizing, preventing and laughing alongside us, we do know that by Be A Hero and the motion of sufferers we’re constructing, Andy’s work will dwell on.”

Barkan is survived by his spouse Rachael, and their two youngsters, Carl and Willow.