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PORTLAND, Ore. (KOIN 6) — Just weeks before he turned 4, Raiden Pham watched the launch of SpaceX Falcon 9 on February 14. There were videos of him and his family on board — and on their way to the moon.
Raiden Pham’s parents began a foundation to help battle his genetic disease
by: Jenny Hansson/ Posted: Mar 20, 2024 / 03:30 PM PDT
Updated: Mar 20, 2024 / 04:31 PM PDT
PORTLAND, Ore. (KOIN) — Just weeks before he turned 4, Raiden Pham watched the launch of SpaceX Falcon 9 on February 14. There were videos of him and his family on board — and on their way to the moon.
It’s been quite the journey for Raiden and his parents, Linda and Tommy Pham. When they first spoke with KOIN 6 News in 2021, they had just launched the Raiden Science Foundation to raise money and awareness for Raiden’s ultra-rare genetic disease.
Their goal was to raise $4 million to find treatments or possibly a cure for UBA5, a disease that presents as quadriplegic cerebral palsy.
“Even though as hard as it is every single day, we just continue to hope, continue to fight every day,” Linda said.
Their efforts to get Raiden’s story out led to Tommy being invited to an event in Los Angeles where he met Space Blue founder Dallas Santana.
“He’s in charge of curating all this art, music, film — human history — on this indestructible disc that’s going to be launched onto the moon,” Tommy told KOIN 6 News.
Santana wanted to include Raiden’s story on that disc. To the Phams’ amazement, it actually happened. On that disc is a “Dear Raiden” video from 2021, pictures of the Pham family and Raiden’s wish for humanity.
This was included on a disc with information about Raiden Pham landed on the moon, February 22, 2024 (Courtesy photo)
And Raiden was watching when the payload landed on the moon February 22.
As Tommy pointed out, Raiden’s story draws parallels with the once-unthinkable reality of landing on the moon.
“We live in a world where there’s advancement in technology, whether it’s for space or for medicine. That’s the same thing for gene therapy or any of these rare diseases,” Tommy said. “Just because you got diagnosed with a debilitating disease like UBA5 doesn’t mean it’s the end game. You just have to have hope and believe in possibility and work for it.”
So far they’ve raised just over $1 million for UBA-5 research. That money has helped to fund studies at OHSU, Baylor and U-Mass. They’re still looking to raise another $3 million.
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