🎉 Run4Raiden is live! Sign up for the virtual 5K & we’ll get a $10 donation for UBA5 research—just check “Bonus $10” at signup! Help us drive awareness for kids affected UBA5 and fundraise for research🙏 Share & tag us with #Run4Raiden #UBA5 🔗 run4raiden25.raiselysite.com

Great news! Our #Run4Raiden $5K matching challenge is complete! But we’re not done yet—our sign up challenge is still going! Every new sign up adds a $10 donation. Keep sharing and invite your friends to join! 🔗 run4raiden25.raiselysite.com

2 days left for #Run4Raiden, and we’ve raised over $20K! 💙💪 Every sign up for our virtual 5K adds $10 to the campaign—it’s not too late to join! Sign up, spread the word, and let’s finish strong! 🏃‍♂️💨 🔗 run4raiden25.raiselysite.com

🥳 That’s a wrap for #Run4Raiden 2025! UBA5 families and their communities across the country came together to raise awareness and fundraise for #UBA5 research. Together, we raised $27,000! Thank you to everyone who joined, donated and supported! ❤️

Check out the innovative research led by @hcmeffordthat, that we have been supporting at St. Jude Research in partnership with CURE Epilepsy 🧠🔬 Read the full article here: bit.ly/4bOwOpk

After 3 years, we finally visited UMass Chan Medical School 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. 💙

During our recent trip to Boston, we also had the opportunity to visit Boston Children's (BCH) and met with Darius Ebrahimi-Fakhari and his incredible team. Did you know there was a 2023 paper about a UBA5 patient from BCH? You can read it here: pmc.ncbi.nlm.nih.gov/articles/PMC10…

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 Make-A-Wish America, Port of Portland, Star Wars Oregon & everyone who made this unforgettable! ✨✈️🌴 #StarWarsDay

Star Wars Day? Make-A-Wish? Raiden? UBA5? Rebellions are built on hope. oregonlive.com/health/2025/05…

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.

Day 1 of #ComboBreaker2025! If you see me, feel free to say what's up! Repping my Raiden Science Foundation shirt.

Thank you for repping us and being a constant supporter. Much love ❤️

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.

A small glimpse of Raiden’s journey, including his Wish trip to Hawaii, was featured in USA TODAY. The story highlights the power of Make-A-Wish America and Disney in bringing joy and hope to families. Read here: usatoday.com/story/travel/e… #UBA5 #raredisease #Awareness

"Because aspects of human brain development are difficult to model in animals," Dr. Heather Mefford @hcmefford.bsky.social & team developed brain organoids from individuals with pathogenic UBA5. Their results "suggest potential treatment avenues for UBA5-associated encephalopathy." science.org/doi/10.1126/sc…

That’s a wrap for #EVO2025! Grateful for everyone who stopped by to support Raiden Science Foundation and showed love. Big thanks to the FGC, Evo staff, and all who made this weekend unforgettable. 💙⚡ #Fight4Rare

Thank you Humble Bundle for supporting us with this incredible bundle. ♥️

(1 of 2) This video of Kerri Ann Hoskins 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

(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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