Raiden Science Foundation

🎧 Tune in to our podcast episode sharing Raiden's journey. Produced by @UMassChan, Real Diseases, Real Stories highlights families changing the world of rare diseases. Listen to our episode & more here: umassmed.edu/rarediseasesre… #RareDiseases #UBA5 #RareDiseasesRealStories

Thank you @KGWNews for sharing our story. kgw.com/article/news/l…

Today is Rare Disease Day, a reminder that “rare” can still have a big impact. At St. Jude, advancing care for rare and ultra-rare pediatric conditions, including neurological disease, is core to our mission.

Today is #RareDiseaseDay. Families of children with rare diseases are featured on @UMassChan’s six-episode Rare Diseases, Real Stories podcast. Listen: direc.to/oYux #RareDiseasesRealStories #RareDiseases #podcast @RareDiseaseDay @RiaanResearch @RaidenScience @UMass 🎧

Today is Rare Disease Day 🦓 Thank you to @OHSUDoernbecher for inviting us to share Raiden’s story and the work we’re driving through the Raiden Science Foundation for UBA5 disorder as part of the 2026 Rare Disease Highlights Day yesterday. #RareDiseaseDay

Researchers at St. Jude are mapping cell fate decisions, motor function wiring and disease-linked gene regulation to better understand developing neural systems and how neurologic diseases disrupt those processes. ow.ly/oKlX50Ym17F

Happy 6th Birthday to our little inspiration! 🎉🎂 If you’d like to help make his day extra special, please take a moment to sign his birthday card. He’ll love seeing the messages and and we’ll read every single one to him. kudoboard.com/boards/mLVaVoTC

@Fight4Rare Part of our nomination video. Check it out. Thank you everyone.

🚨 Fight4Rare community, we need your vote! Help @RaidenScience win a Project For Awesome grant to fund #RareDisease research. 🗳️ Vote here: projectforawesome.com/videos/project… Takes 1 minute. Please #vote and #share. — Project For Awesome is an annual, community-driven YouTube charity event that has raised over $27M since 2007 for nonprofits. Winners are decided entirely by community votes.

@UMassChan ❤️

UMass Chan and the Raiden Science Foundation have partnered on a technology license for a gene therapy product targeting the ultra-rare disease UBA5: direc.to/oUP4 The foundation is named after 5-year-old Raiden Pham, diagnosed in 2021. #RareDisease @RaidenScience

🚨Got 2 minutes? Vote for us in this year's Project For Awesome. Voting is open until 2/18. Community votes decide which charities receive the P4A grant. 👉projectforawesome.com/videos/project… #RareDisease #UBA5 #Awareness #Research #P4A2026 #community

This is why we fight. For kids like Marko and his family. Awareness brings support. Support drives research. Research brings hope.

Grateful beyond words. Because of our community, $135K raised in December to move UBA5 gene therapy one step closer to reality. Thank you. 💙

🎄 Looking to donate crypto this Christmas? Consider supporting us as we work to raise $2M to fund UBA5 gene therapy—giving hope today and changing lives tomorrow. ❤️link here: thegivingblock.com/donate/raiden-… #cryptoforgood #raredisease #genetherapy @givinblockdonor

Congrats again to @TongNeverSleeps and the Metro City Monsters! @FightRiseFGC - Thank you so much for the support and generosity from the community. $7K raised for rare disease research - @RaidenScience ❤️ @ImageOmega @HawtSoupMedia @ultradavid

Live now! Tune in: twitch.tv/fightrisefgc Shoutout to @ultradavid for the great intro about the @RaidenScience 💙 @FightRiseFGC @TongNeverSleeps

Wreck the Halls 3 is this Sat night @ 7pmEST! A unique East vs West "Cross-Up Basebrawl" Charity Stream benefiting @RaidenScience. Featuring special guest managers @ultradavid & @TongNeverSleeps. Donate to Win Prizes: fightrise.com/charity Watch LIVE: twitch.tv/fightrisefgc

Grateful to @QanbaUSA for sponsoring our Charity Stream benefitting @RaidenScience's fight against rare genetic disorders! Check out this sick Arcade Cab they donated as one of our fundraiser incentives. Enter for your chance to win it here: fightrise.com/charity

The power of a determined parent and the power of gene therapy. Incredible story. ❤️ people.com/8-year-old-has…

Thank you to everyone who supported this past #GivingTuesday. Your generosity helps us move closer to manufacturing the #UBA5 gene therapy — the next phase of our R&D efforts. Together, we are turning hope into reality.