Even if you don’t know Ady Barkan by name yet, there’s a good chance you’ve seen him on your TV screen.

The 37-year-old has spent his life advocating for progressive causes, and his work has only increased in fervor since he was diagnosed with the terminal neurodegenerative disease ALS in 2016. “Not Going Quietly,” the SXSW audience award-winning documentary by Nicholas Bruckman, tells the story of his life and Be A Hero, his movement for healthcare reform in America.

“Hey hey hey, party people!” Barkan said on Thursday at the reception before the “Not Going Quietly” premiere at Plaza La Reina in Los Angeles, speaking via eye gaze technology. “I am going to play against type and refrain from any high-flying oratory right now. If you want to hear me wax poetic about democracy or reflect upon fatherhood and mortality, join us at the theater in an hour and you will get plenty of that. Instead of a long speech, I will just share some words of gratitude,” he said before publicly thanking his wife, Rachael, and other friends, family and collaborators.

Amy Landecker (“Transparent”), who co-hosted the event, told Variety that Barkan officiated her wedding with Bradley Whitford (“Transparent,” “The West Wing”) two years ago: “To say we have a close connection to him would be an understatement.” Barkan and Whitford first met at a political action event to speak to Senator Dianne Feinstein years ago, and their families became “fast friends,” with Whitford eventually joining “Not Going Quietly” as an executive producer. Landecker is most struck by Barkan’s selflessness: “To find out when you’re only 32 years old that you have ALS, when you have just married the love of your life and you have a newborn baby on the way, and then to decide — instead of to just go into despair — to go into action and run around the country advocating for the rest of us is… ” she said. “You know, most of us don’t have that kind of commitment to other people.”

Lazy loaded image
Jon Favreau attends the premiere of ‘Not Going Quietly’ at the Plaza La Reina Hotel on August 12, 2021 in Los Angeles, California. Michael Buckner for PMC

John Favreau, host of “Pod Save America,” also co-hosted the event and shared what he’s learned from his friendship with Barkan. “There are times in the film you’ll see where [Barkan] can get frustrated and angry and scared and exhausted. Which I think is why the film is so powerful. I tend to think that idealized versions of our heroes let the rest of us off the hook,” said Favreau. “Because if all we see is our heroes as icons, without flaws or fears or doubts, then it becomes easier for us to say, ‘Well, that’s not me. I can’t be that courageous. I can’t be that selfless. I can’t be the kind of person who sacrifices that much, who gives that much of myself to others.’ [But] we choose to be brave. Ady makes that choice. Rachael makes that choice. Liz [Jaff, co-founder of Be A Hero,] makes that choice. The entire Be A Hero team has been literally telling us for years that we can all be heroes.”