Portland Magazine
February 21, 2022
The inspiration behind one UP alum’s pitch for more research into a rare genetic disease and potential gene therapies.
Story by Jessica Murphy Moo
Photo by Adam Guggenheim
As I was working on Hope Through a Microscope—a story about genetics research—several UP staff and alumni reached out to tell me about Tommy Pham ’09, MBA ’11, his beautiful family, and the rare disease research foundation Pham recently launched. The company is the Raiden Science Foundation, named after his two-year-old son Raiden, who has been diagnosed with a rare genetic UBA5 disease (so rare that there have been only about 30 genetically confirmed cases worldwide).
Before we get to the foundation, I want to introduce you to Raiden. I had the great good fortune to meet him. He is (as you see above) an off-the-charts cute kiddo, he smiles and giggles during peekaboo (especially when it’s his big sister playing with him), he enjoys pools in Hawai'i, and he likes engaging in a hand-tapping game with his mom. “He brings us so much joy,” his mom, Linda Pham, says.
The Phams have been very open about their journey as a family. Joy is part of this journey. It has also been very challenging. Raiden’s health battles have been hard—unthinkably hard—but he is also what motivates them every day.
Raiden was born in February 2020, right before the start of the pandemic. At three months Raiden stopped hitting milestones. He stopped being able to pick his head up and he vomited about 10 times a day, which led to failure to thrive. They endured many hospital stays, tests, and unofficial diagnoses, and they ultimately had surgery to place a g-tube in his stomach, so Raiden could get the nutrients he needs. Then, in August, they received results after sequencing his genes. The news wasn’t good news. UBA5, they learned, is a recessive, ultra-rare, progressive neurological disease.
The family went through what Tommy calls a “dark period.” Tommy, a former biology major who has worked for OHSU and created a biotech startup (through his E-Scholar roots), knew how to read the results. There was very little literature out there on this particular genetic condition. There was no way to sugarcoat the news.
They then decided to take a trip to Hawai'i “to make family memories,” before coming back to come up with a plan. Tommy knew how to create a start-up. He knew scientists in the biotech field and elsewhere. He had a ready-made network. He knew who to reach out to.
“I’m an E-Scholar and an entrepreneur. I can start a foundation. I can control that. That’s not a problem,” he says. “But with my son’s health, there are a lot of variables. I can’t control that.”
So, mere months after the diagnosis, with three UP alums, a Nobel Prize-winning scientist, and a host of other professionals on the team and board of advisors, Raiden Science Foundation was launched. They are raising funds for therapy development and building community with other families walking a similar path. They are hoping their efforts and research (with the goal of getting to clinical trials and gene replacement therapy) will raise awareness of families dealing with the hardships of a rare genetic diagnosis.
I have immense admiration for the Pham family. Both Linda and Tommy work for Nike. Right now, they are working from home (truly, they are working 24-7). “We are racing against the clock and have one shot at this,” Tommy says.
“We have to start from scratch,” Linda says, “but we have to start from somewhere.”
If you would like to learn more about the Raiden Science Foundation, their story can be found at raidenscience.org
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