Race against time to defeat UBA5

We are launching a GoFundMe campaign to accelerate promising research & therapeutic development for UBA5 disease. UBA5 is a rare progressive neurological genetic disorder. There have been less than 30 genetically confirmed and reported cases in the world. Life expectancy is unknown, and kids impacted can suffer from movement disability, cognitive impairment, and uncontrollable epilepsy. There are no effective treatments or cures currently for UBA5 disease.

Our son, Raiden Pham, suffers from UBA5 disease. He is still young and slowly progressing cognitively. While Raiden is at high risk for seizures, they have not yet begun and so we are racing against time. If we can deliver gene therapy for Raiden soon enough, we may be able to reverse his disease trajectory and give him a better quality of life. Follow his journey on Instagram @Raiden_Journey . 

But this journey is more than just about Raiden. It is about creating hope and treatment for kids suffering from UBA5 disease today and tomorrow. The gene therapy research will also unlock the know-how to optimize and scale a personalized medicine platform that can lead to life-saving treatments for countless other rare diseases.  Through this journey, we are advancing rare disease education and awareness, encouraging and demonstrating the way forward for clinical research, and accelerating medical breakthroughs for the collective rare disease community.

We are breaking down research barriers to advance gene therapy for UBA5. Raiden was diagnosed in August 2021, and within 2 months, we were able to establish a partnership with UMass Chan Medical School to make this more than just a hope. The UMass Chan research team will be creating a gene replacement therapy program for UBA5. Read more here.

We founded the Raiden Science Foundation (“RSF”) on Thanksgiving 2021. Visit our website to learn more.

Our MISSION is to harness to power of family, community, and science to accelerate the development of UBA5 therapies. 

Our VISION is to create a future where there are paths forward for treating rare diseases and empowering families to make a difference. 

The only way Raiden and potentially other UBA5 patients can receive gene therapy within 3 years is to raise $4 million with an initial goal of $1 million to start the pre-clinical research & development. 

Together, we can do this. 

Please donate if you can and/or share this campaign with your friends, family, and colleagues.

No donations will be used for Raiden’s care or other personal use. Raiden Science Foundation is an Oregon nonprofit operating through a fiscal sponsorship with Rare Village Foundation, a Texas 501(c)(3) tax-exempt organization. Donations to RSF are tax-deductible within the guidelines of U.S. law. Rare Village Foundation will manage the funds and ensure that they will go directly to Raiden Science Foundation to only accomplish our mission.

Fundraising team: Raiden Science Foundation (4)

Linda Pham
Raised $24,001 from 242 donations
Beaverton, OR
Rare Village Foundation
Registered nonprofit
Donations are typically 100% tax deductible in the US.
Tommy Pham
Team member
Raised $83,171 from 107 donations
Jessica Wallans
Team member
Raised $3,771 from 65 donations
Ruth Napier
Team member
Raised $783 from 10 donations

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