Raiden Science Foundation
@RaidenScience
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Give kids suffering from UBA5 disease a chance to live a healthy life.
Joined February 2022
🎧 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: https://t.co/lvciJUNPPE
#RareDiseases #UBA5 #RareDiseasesRealStories
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Thank you @Humble for supporting us with the WB Play the Legends gaming bundle. @wbgames Such an incredible amount was raised to advance rare disease research. @RaidenScience
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Dystonia is a rare neurological movement disorder. - Can affect many parts of the body - Caused by faulty brain signals - Leads to spasms or uncontrollable movements - Severity & pain can vary Some children with UBA5 disorder suffer from dystonia. #RareDisease #UBA5 @dmrf
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Recap video from EVO Las Vegas 2025! Hard to believe it’s already been almost a month. We had an incredible time connecting and celebrating with the FGC — and raising awareness for rare diseases with the community joining our fight. Huge thanks to our supporters, donors,
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Huge thanks to the @JadeDistrict International Night Market for having us! It was amazing to connect with our local community and raise awareness for #UBA5 💙 Special thanks to our rockstar intern Abby and her friends & family for making this happen.
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One of the best gaming bundles out there! Please consider supporting us by making a purchase.
Get over here! The definitive MK11 experience awaits with Mortal Kombat 11 Ultimate, part of the Best of Humble Bundle: WB Play the Legends supporting @Fight4Rare | https://t.co/gVz3U5EzzK
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"Because aspects of human brain development are difficult to model in animals," @hcmefford & team developed brain organoids from individuals with pathogenic UBA5. Their results "suggest potential treatment avenues for UBA5-associated encephalopathy." https://t.co/xKb0YqIQY4
science.org
Patient-derived cortical organoids facilitate disease modeling and assessment of potential targeted therapies for UBA5-related disorder.
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(1 of 2) This video of @KerriAnnGallery was first shared on Lil’ Raiden’s IG a year ago, but we never posted it here. So here it is—showing just how special Kerri is as she continues fighting alongside us. ⚡️💋 #Sonya
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(2 of 2) Exactly a week ago marked four years since Raiden’s diagnosis day—the day we learned about UBA5 disorder. It’s always a tough day, filled with overwhelming emotions and grief. But at the same time, we’re deeply thankful to be surrounded by the FGC, our MK family and the
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Thank you @humble for supporting us with this incredible bundle. ♥️
Dive into the worlds of Batman, Mortal Kombat, and Middle-earth with the Best of Humble Bundle: WB Play the Legends featuring: - Batman: Arkham Knight Premium Edition - Middle-earth: Shadow of Mordor - Game of the Year Edition - Mortal Kombat 11 Ultimate Edition - and more!
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That’s a wrap for #EVO2025! Grateful for everyone who stopped by to support @RaidenScience and showed love. Big thanks to the FGC, @Evo staff, and all who made this weekend unforgettable. 💙⚡ #Fight4Rare
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A small glimpse of Raiden’s journey, including his Wish trip to Hawaii, was featured in @USATODAY. The story highlights the power of @MakeAWish and @Disney in bringing joy and hope to families. Read here: https://t.co/n0jG0Gl68Q
#UBA5 #raredisease #Awareness
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Great meeting so many experts at the 1st Int’l Pediatric Movement Disorders Course in Boston this past Saturday. Thankful for the opportunity to share our mission + raise UBA5 awareness.
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Thank you for repping us and being a constant supporter. Much love ❤️
Day 1 of #ComboBreaker2025! If you see me, feel free to say what's up! Repping my @RaidenScience shirt.
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Day 1 of #ComboBreaker2025! If you see me, feel free to say what's up! Repping my @RaidenScience shirt.
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We’re incredibly fortunate to have Dr. Heather Mefford and her team studying UBA5 disorder and the potential applicability of their innovative research to impact other rare neurological diseases.
Scientists developed a patient-derived organoid model for UBA5-associated encephalopathy, revealing stunted GABAergic interneuron growth as a cause of seizures. Boosting activity of the hypomorphic UBA5 gene shows promise as a potential therapy.
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Star Wars Day? Make-A-Wish? Raiden? UBA5? Rebellions are built on hope. https://t.co/jXrQvHyGeB
oregonlive.com
Costumed volunteers created an unforgettable moment for 5-year-old Raiden Pham, who battles a rare genetic disorder, as he embarked on a Make-A-Wish vacation on Star Wars Day.
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May the Fourth be with you! Raiden’s Make-A-Wish trip to Disney Aulani kicked off with a galactic send-off this morning at the PDX airport. Thank you @MakeAWish, @PortOfPortland, @starwarsoregon & everyone who made this unforgettable! ✨✈️🌴 #StarWarsDay
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During our recent trip to Boston, we also had the opportunity to visit @BostonChildrens (BCH) and met with @DariusFakhari and his incredible team. Did you know there was a 2023 paper about a UBA5 patient from BCH? You can read it here: https://t.co/yEUysO7GDO
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After 3 years, we finally visited @UMassChan to tour their campus & labs! 🙌 It was amazing meeting the UBA5 gene therapy team + the Dean. The passion and world-class research here continue to fuel us. Grateful to partner with the team as we move toward the clinical phase. 💙
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Check out the innovative research led by @hcmeffordthat, that we have been supporting at @StJudeResearch in partnership with @CureEpilepsy 🧠🔬 Read the full article here: https://t.co/jOBg4B3n1i
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