For John Gourley, frontman and ringmaster for Portugal. The Man, no one has been more inspirational to his songwriting than his 12-year-old daughter. “I’ve been writing songs about Frances since she was born,” he says with a smile. “Yeah, it’s all been Frances since 2011.” The offspring of Gourley and his wife (and fellow PTM band member) Zoe Manville, Frances was the subject of a private benefit concert in Venice, California over the weekend, hosted by the Playing for Change Foundation. In 2021, she was diagnosed with Dehydrodolichyl diphosphate synthase—or DHDDS—an extremely rare genetic neurodegenerative disease. There is no cure.
Portugal. The Man have flown in from their home city of Portland to perform at “Playing for Frances,” an event billed as a night of “Music and unity in support of 12-year-old Frances Gourley.” The fundraiser is the latest step in her parents’ crusade to find a cure for DHDDS—a disease so rare that only 70 people in the world are known to have it. The symptoms for their daughter have included epilepsy, body tremors, lack of muscle control, migraines, and nausea. It’s a neurodegenerative disease similar to dementia or Alzheimer’s.
The family had already set up a website to raise money and support, and the night’s performance is an active step into the larger fundraising world. They note that 90 percent of rare childhood diseases lack FDA-approved treatments. “We’re lucky enough to have such a strong community around us,” says Gourley, who’s originally from rural Alaska. “It’s just the way we grew up as Alaskans—you see people in the ditch, we help them out. And people just kept bringing things to us and saying, ‘We want to help out.’”
“It’s just the way we grew up as Alaskans—you see people in the ditch, we help them out. And people just kept bringing things to us and saying, ‘We want to help out.’” — John Gourley
Despite the seriousness of the cause, Portugal. The Man perform a typically festive weekend set of danceable indie rock on a small stage. Playing what Gourley describes backstage as a “Frances-heavy” collection of songs inspired by his daughter, the band open with “Purple Yellow Red and Blue” from 2013’s Evil Friends album. In his signature bucket hat and mustache, and a T-shirt depicting metal guitar hero Dimebag Darrell, Gourley sings: “All that I needed / Is something to believe in / ’Cause everything just falls in place like that.”
There are also songs from the band’s newest album, Chris Black Changed My Life, including “Grim Generation” and “Summer of Luv.” Frequent collaborator Asa Taccone from Electric Guest joins the band onstage for a rendition of his “This Head I Hold,” while other guests include GRAMMY-winning producer Jeff Bhasker and songwriter Redray Frazier, who closes his short opening set with a stirring cover of Radiohead’s “High and Dry.”
Portugal. The Man also deliver the 2017 GRAMMY-winning hit “Feel It Still,” a multi-platinum crossover track that Gourley says was directly related to both Frances and his unusual life being in a band. “‘I’m a rebel just for kicks’ is me talking about being in a band and I want to do things that help people, help community. I want to use our platform appropriately and take care of my young daughter. Now that it’s kind of out there, and we know what [disease] it is, it’s weirdly like a weight lifting. ‘OK, now we know what we’re trying to achieve—we have a goal here.’”
The private event unfolds in a private home with a crowd of 250 friends and donors. Among the guests attending is Jónsi, frontman for the Icelandic post-rock band Sigur Rós. Jake Groshong, CEO of Playing for Change, estimates the event and auction will raise over $250,000. “We use music to solve social issues that people in need are facing,” says Groshong. “Whether that’s human trafficking in Nepal, gang violence in Brazil, our programs in refugee camps in Uganda and Jordan—or, in this case, rare diseases. And we’re here to help support that and find a cure for Frances and other kids in need.”
“It is a little different than just playing a show, and of course I’m thinking about Frances... It reminds me of why we’re here and what we’re doing.” — Zoe Manville
While Frances has sometimes appeared onstage with her parents in PTM, and is seen early in the evening being entertained by the DJ, she’s in bed asleep by showtime. “It is a little different than just playing a show, and of course I’m thinking about Frances,” says Manville before the set. “She was here half an hour ago dancing around. It reminds me of why we’re here and what we’re doing.”
Among those who turned up to help is veteran songwriter Paul Williams, now 83, whose decades of hits stretch from the Carpenters and Barbra Streisand to The Muppets and Daft Punk. He’s also become a friend and occasional collaborator with Gourley and Portugal. The Man (he co-wrote and sings on “Anxiety:Clarity” from their new LP). “I feel like family to John and Zoe and Portugal. The Man,” Williams shares onstage in Venice before the band’s performance. “I’ve been blessed since I was 27—which is 200 years ago. I’ve been making music with amazing people and experiencing miracles in my own life. And we need a miracle.”
He also announces a special auction item: a song written by Williams and Gourley for the highest bidder—“whatever you want us to write about,” Williams explains. “Your elder lover, the secret your wife doesn’t know about, your dog. I’ve written songs about an Arkansas elephant sanctuary. I’ll write about anything, and I’ll make it dirty if you want.” Backstage, Gourley tells me, “When you meet Paul, he could easily be an Alaskan dad. He weirdly fits into any group that he’s around.”
The auction also includes autographed items donated from Coldplay, Radiohead, Tenacious D, Billie Eilish, Benny Blanco, Phoebe Bridgers, and Tony Hawk, among many others. The online auction will remain open through Thursday, March 14.
After the benefit, Portugal. The Man are headed to a string of concerts in Mexico, before flying to Australia for more shows, along with Frances. The band will start sketching out some new music this year in an accessible, newly built studio space in Portland. “We can make music and have Francis around,” Gourley says with a nod. “I’ll be working this summer.” Frances will of course remain central to whatever new music emerges, as her parents continue pushing for more research for treatment and cures for the rarest childhood diseases. “Our goal is to ease the pain and suffering, not to change who our kids are,” Manville reads from a statement onstage. “We don’t want to change them for the world, but we do want to change the world for them.” FL
