For nearly two decades, Alaskan indie rockers have been betting on Portugal. The Man built a successful career largely on his own terms, independently releasing his first five studio albums before signing with Atlantic Records.
In 2017, the band broke into the mainstream with the release of the Grammy-winning single “Feel it Still,” which propelled their eighth studio album Woodstock to platinum prestige in the United States, ranking in the top 10 in approximately 20 countries.
But a tricky moment would come after the lightning bolt of their biggest hit, with the band wasting their friend and collaborator Chris Black, who passed away in 2019.
While the pandemic largely eliminated classic live performances since early 2020, the band’s new studio album, Chris Black Changed My Life, ninth, ended the longest hiatus between Portugal’s Man’s Studio Albums.
One of the new album’s highlights, “Time’s a Fantasy,” features the vocals of 12-year-old Frances, daughter of Portugal’s co-founder. Singer-songwriter John Gourley and singer Zoe Manville, who sing “I’ve got a feeling everything’s going to be okay. “
In 2019, Frances was officially diagnosed with DHDDS, a rare neurodevelopmental disorder with only about 70 confirmed cases in the entire world.
The diagnosis was a long time coming, as the couple first felt something when their daughter was just 3 years old. The symptoms worsened and the seizures began in early 2021, when Frances was just nine years old, and genetic testing finally showed the diagnosis. .
“I think, in general, we’re going to get those generic terms or labels, things that will help you navigate the physical care system,” Manville said in a recent verbal exchange in Chicago. “We’d hear things like, ‘Well, Frances has ADHD. ‘ But things progressed and more and more things happened that were red flags,” he explained. “So we did a lot of genetic testing and all that. Then it took some time to get a result. They gave us a result, but then we had to wait six months before telling anyone, because things were still so disorganized after the pandemic. So yes, it was weird.
Because it only affects a small number of people worldwide, the American healthcare formula is not very effective in terms of treating DHDDS.
If studies are done, they will be done slowly over time. They’re also incredibly expensive. Unlike the process of developing a vaccine during the COVID pandemic, which had the potentially lucrative ability to have a quick effect on billions of people worldwide, DHDDS only affects a handful of people by comparison, leading to impacting studies, development, and dollars elsewhere.
John Gourley (left) and Zoe Manville (right) from Portugal. The boy and his daughter Frances (center) are forArray. [ ] raise awareness about DHDDS, a rare neurodevelopmental disorder
During a recent interview on NBC’s The Today Show, Manville and Gourley explained that since there is currently no treatment for DHDDS, a personalized treatment will be created just for Frances, costing about $2 million.
“Frances wants some kind of treatment development,” Manville explained. “There’s a generation to do those things. We’re just getting started. But you just have to start from scratch. You can’t go through the fitness system. There is no insurance to take out. Because this remedy does not exist. So, families and loved ones have a duty to create that,” she said. “What is needed are researchers and scientists, and enough time to examine cells and genetics in general. And, in the end, it costs a lot of money to start from scratch. So that’s where it all starts,” Manville said. “It’s conceivable that we can do this for Frances and then make it bigger for other young people. Because now there are other young people who receive this diagnosis, with other mutations besides Frances, but little by little it is appearing. Because in the last two or three years genetic testing has been used, whereas before it just wasn’t like that. People would just say, “Oh, it’s expensive. ” It’s inaccessible.
Zoe Manville and John Gourley of Portugal. The Man pose during Lollapalooza weekend at the Chicago … [+] Athletic Association. Friday, August 4, 2023 in Chicago, IL
While investment is clearly key to launching new treatments, DHDDS is a case where awareness is just as important. With very little data available online on this condition, most people simply aren’t aware of a rare disease referred to by terms like epilepsy, Parkinson’s disease, and dementia.
In an effort to help change that, Manville and Gourley have launched a GoFundMe which could impact not just Frances but anyone else who’s currently diagnosed or may be in the future.
“I think it’s just about the future of genetics. We want to help further things like drug repurposing,” said Gourley. “The costs are so high. So, the goal is really lowering the costs. But, if we can get a lot of drug repurposing done – even just in this small pocket – it’s gonna serve so many more people and lower the costs in the future,” he said.
CHICAGO, ILLINOIS – SEPTEMBER 16: Kyle O’Quin, Zoe Manville, Eric Howk, Zachary Scott Carolthes and. . . [ ] John Gourley of Portugal. The Man performs at Riot Fest at Douglass Park on September 16, 2022 in Chicago, Illinois (Photo via Barry Brecheisen/WireImage)
“Yes, we are thinking about treating Frances, but in doing so, simply reading about the disease and looking at it more closely helps other members of the DHDDS community,” Manville added. “Because nothing is happening. It’s me and another mother in the UK who is leading those efforts. That’s just the way it is,” she said. There are millions of people with rare diseases. What happens is that they are absolutely neglected. Nobody cares because they can’t make money from them.
When it comes to something like DHDDS, for which there are currently few concrete answers, the question of how severe the degenerative disorder will become and when looms large.
While the pair now live in Portland, Portugal. The Man (who kicks off a North American tour on Friday, Feb. 2, 2024, in Del Mar, California), formed in Wasilla, Alaska, in 2004, a position and mindset that continues to advise Manville and Gourley in their attempt at change. belief and rare diseases in the United States.
John Gourley (left) and Zoe Manville (center) from Portugal. The boy and his daughter Frances (right) are looking for Array. [ ] Awareness of DHDDS, a rare neurodevelopmental disorder
“We’re Alaskans, man,” Gourley said with a smile. “You grow up in a position where the environment can literally kill you if you’re not prepared,” he said with a laugh. “Community is very important. I grew up in a position where we had a gas station and a video store in Knik. And a bar. But that’s about it. And we’re all scattered. We are 8 kilometers from our nearest neighbor. We’re not with anyone. “I think it’s very family-oriented and network-oriented. I’ve never written about non-public things as much as I did about the new album. I mean, Chris Black Changed My Life is the biggest private record we’ve ever done,” he said.
“I think it’s so deeply ingrained that that’s how it manifests,” Manville acknowledged. “I mean, I think about this: It would have been hard to know [about the diagnosis] when Frances was 3 or 4 years old. But, at the same time, I feel like I would have been at least one step ahead. “she said. ” There’s nothing I regret doing with it. I think all of this helped. But there are other people in the same boat who waste so much time and so much money on such things. And he’s unhappy. You just don’t have that kind of time to waste. So, I think I hope that other people will start perceiving those things sooner, as sad as it is. And then have time to combine those resources and raise money,” Manville explained. “And I hope that one day we’re not on this stage anymore. I think promising things are happening in the global realm of genetics and treatment. It’s just that we’re just at the beginning, you know?