A separate foundation for UBA5 research
Raiden Science Foundation
A US foundation set up by the parents of Raiden, another boy with UBA5. It funds the UBA5 gene therapy being developed, which hasn’t yet been tried in people.
- Founded in 2021 in Oregon, USA
- US 501(c)(3) charity, EIN 87-3106343
- This page was written by Vakaris’s foundation, not by the Raiden Science Foundation.
Two different foundations
- Who runs it
- Vakaris loves life foundationVakaris’s parents, Lithuania (company code 306847902)
- Raiden Science FoundationRaiden’s parents, USA (a 501(c)(3) charity)
- What it pays for
- Vakaris loves life foundationVakaris’s treatment, therapies and equipment
- Raiden Science FoundationDeveloping the UBA5 gene therapy
- How to give
- Vakaris loves life foundationBank transfer, or 1.2% of Lithuanian income tax
- Raiden Science FoundationBy card on their website, in US dollars
Who they are
Tommy and Linda Pham founded it in 2021, after their son Raiden was diagnosed with UBA5 disorder. Since then the foundation has brought money and scientists together to look for a treatment.
It is not part of our foundation: it is a separate US organisation. We tell its story because its work matters to every child with UBA5.
What they fund
- An AAV9 gene therapy that delivers a working copy of the UBA5 gene to cells, developed at UMass Chan Medical School (USA).
- Manufacturing the therapy, and the studies needed to start clinical trials.
- A UBA5 family registry and biobank, so scientists can contact families and study the condition.
The road to a treatment
- 2022The foundation’s first gift – UMass Chan begins UBA5 gene therapy research
- Feb 2026The therapy is licensed to the Raiden Science Foundation
- Aug 2026Manufacturing partner: Genezen (USA)
- Sep 2026US FDA Rare Pediatric Disease designation (per RSF). It is not yet a licence to treat.
- NextStudies needed for regulatory approval, then the first clinical trial (no date announced)
Why it matters for Vakaris
Vakaris has UBA5, the condition this therapy is being developed for. So far it has been tried in mice, not in people. The first study is planned in the USA; no start date has been announced, and who could take part isn’t known yet.
For us, it is a small ray of hope.
Give directly to the foundation
Support the UBA5 gene therapy
Your gift goes straight to the Raiden Science Foundation – our foundation does not receive it.
- By the end of 2026 – $500K to manufacture the therapy
- By September 2027 – $2M for the full path to a clinical trial
Goals as the foundation published them in 2026 (raidenscience.org).
Donations are made on their website, in US dollars.
To support Vakaris himself, give to the Vakaris loves life foundation.
Support Vakaris