Going to the moon has long sparked the imagination. An Oregon nonprofit also hopes it can spark some generosity.
The lunar lander that touched down on Thursday carried a celestial time capsule that contains hundreds of stories, including that of Beaverton’s Raiden Pham, who will celebrate his fourth birthday on Feb. 26. Raiden has UBA5, an ultra-rare genetic disease that presents as quadriplegic cerebral palsy.
It was the first time an American-built spacecraft landed on the moon’s surface in more than 50 years. The lunar lander also carried some of Columbia Sportswear’s technology.
In 2021, Raiden’s parents, Tommy and Linda Pham, founded a nonprofit that has raised $1 million for UBA5 research. They hope the lunar landing supercharges fundraising and pushes the total to $4 million, which would mostly fund the latest gene replacement therapy research at the UMass Chan Translational Institute for Molecular Therapeutics.
“If you think about doing the impossible, or making the impossible possible, you think about going to the moon,” Tommy Pham said. “Our rare disease journey is also about doing the impossible.”
The message on the moon isn’t costing the Phams, or the Raiden Science Foundation, a dime. Space Blue let them hitch a ride for free.
As part of its Lunaprise Mission, Space Blue is leaving the time capsule, an etched disc, on the moon. It includes the work of more than 200 artists and is meant to showcase human achievement.
The mission’s organizers initially said their lander had touched down intact but said late Friday that the spacecraft is on its side. The lander is still functioning to some degree but it wasn’t immediately clear how the mishap would affect the overall mission or the time capsule.
Pham met Space Blue founder Dallas Santana at an event in Los Angeles about a year ago.
“Tommy told me about his son and shared a video with me and shared the pictures and the story with me,” said Santana, who also curated the Lunaprise Mission. “It had always been our plan to allow what we were doing, going to the moon, to be an opportunity for stories to come out that would inspire humanity and make the earth a better place.”
UBA5 is the name of a gene. In Raiden, that gene is defective. Without additional research, the outlook is grim. The life expectancy for UBA5 patients typically doesn’t extend beyond childhood.
“We believe in the advance of technology,” Pham said. “Now we’re exploring space. We’re getting things onto the moon. Same thing with rare disease. Just because you have a rare disease it’s not the end game.”
There wasn’t much research on UBA5 when Raiden was diagnosed.
Pham works for Nike. He previously worked for Oregon Health & Science University in technology transfer, helping bring OHSU innovations to the marketplace. Pham cofounded Nzumbe, a genetic drug screening platform, and the Children’s Cancer Therapy Development Institute.
After his son’s diagnosis, he started reaching out to his biotech and academic contacts.
The Phams also founded the nonprofit Raiden Science Foundation which has raised more than $1 million and funded UBA5 research at OHSU, Baylor College of Medicine, St. Jude Children’s Research Hospital and UMass Chan Medical School.
“Not everyone comes from a wealthy family,” Pham said. “Not everyone is an influencer. We’re just an average family. We’re not wealthy. Look at what we’re able to do because we kept on fighting.”
UMass is the focal point of the research, Pham said. It’s working on gene therapy for UBA5. It will take $4 million to fully fund the research, hence the fundraising goal. If successful, the research would benefit Raiden, but also other UBA5 patients and open the door to scaling it out to other diseases.
“We have shown proof of concept,” Pham said. “Now we’re on the efficacy and toxicology steps.
If all goes well, clinical trials could start in late 2025.
Pham went to the launch gala at the Kennedy Space Center in Port Canaveral last week, but he missed the launch because it was delayed. He had promised daughter Jordyn Pham he’d be home for Valentine’s Day.
“The more we can get our story out there, especially about being the first on the moon, I think it will inspire a lot of families to fight and to not give up.”
This article has been updated to note Friday’s announcement that the moon lander is on its side.
– Matthew Kish covers business, including the sportswear and banking industries. Reach him at 503-221-4386, mkish@oregonian.com or @matthewkish.
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