Our Story
A little hero from Oregon
Raiden Pham suffers from an ultra-rare genetic disease called UBA5. It's so rare, that there are only about 30 cases in the world. It's also progressive, so things will get worst over time. Kids impacted by this are severely disabled, suffer from untreatable seizures and have a shortened life expectancy. Raiden is 2 years old and cannot sit, walk or talk. He can barely control his arms and is fed via a stomach tube for survival. But Raiden is full of smiles and life. His fight inspires us all.
Raiden Science Foundation
More than just hope
RSF was launched a year ago with a mission to harness the power of the community to innovate treatment for rare diseases, starting with UBA5. We are partnering with UMass Chan Medical School to create a groundbreaking gene therapy for UBA5, but the clock is ticking... The scientific discovery and treatment option we uncover will have a generational impact for numerous other rare diseases and has the potential to save countless lives. Together, we can do this.
Mortal Kombat
What's the connection there?
Raiden was named after the God of Thunder from Mortal Kombat (MK), one of the longest-running fighting game franchises in the world. It seems almost like fate that Raiden was named after this Thunder God as he is fighting for his life and others affected by UBA5. This year is MK's 30th anniversary and the perfect opportunity to mobilize this moment and collectively rally around the purpose to fight against rare diseases. Will you join us in this battle?