Raiden Science Foundation
@RaidenScience
Give kids suffering from UBA5 disease a chance to live a healthy life.
🎧 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 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.
Day 1 of #ComboBreaker2025! If you see me, feel free to say what's up! Repping my @RaidenScience shirt.
This is a prime example of why NIH funding is so critical for rare disease research, especially in the early stages of developing genetic models to understand diseases like UBA5 disorder better. We are featured in the article. orip.nih.gov/about-orip/res…
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: usatoday.com/story/travel/e… #UBA5 #raredisease #Awareness
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.
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.
Star Wars Day? Make-A-Wish? Raiden? UBA5? Rebellions are built on hope. oregonlive.com/health/2025/05…
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
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: pmc.ncbi.nlm.nih.gov/articles/PMC10…
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. 💙
Check out the innovative research led by @hcmeffordthat, that we have been supporting at @StJudeResearch in partnership with @CureEpilepsy 🧠🔬 Read the full article here: bit.ly/4bOwOpk
🥳 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! ❤️
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
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
🎉 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
❤️🔥 Huge Friday Announcement! ❤️🔥 For every new #Run4Raiden sign-up, $10 will be donated to our campaign (up to $5K)! 🙌 ✅ Sign up FREE & check "Bonus $10"! 🏃♀️ Join here: run4raiden25.raiselysite.com Help spread awareness about #UBA5 & #RareDisease! RT to keep the momentum going!
🚨 Fundraising update Thank you to everyone who has supported us. Please keep sharing, or if you haven’t joined yet, please consider creating a team. #Run4Raiden 🏃 🏃♀️ run4raiden25.raiselysite.com
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🚀 Last week, we kicked off our first newsletter of 2025! If you missed it, check it out here: createsend.com/t/y-5C8EA77873…
🚨 $5K MATCH ALERT! 🚨 Every $5 donation to our #Run4Raiden Virtual 5K is doubled up to $5K! 💙 Link here: run4raiden25.raiselysite.com Big thanks to our generous donor—let’s maximize this match! 🙌 #UBA5 #5K
