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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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
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Live now! Tune in: https://t.co/rk8BSUpNXz Shoutout to @ultradavid for the great intro about the @RaidenScience 💙 @FightRiseFGC @TongNeverSleeps
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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: https://t.co/L1lTorZGTi Watch LIVE: https://t.co/Mhp1ftwhYa
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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: https://t.co/oJSo2o1mdn
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The power of a determined parent and the power of gene therapy. Incredible story. ❤️ https://t.co/dVtC4RAXOb
people.com
Amber Freed tells PEOPLE how she worked for years to find a treatment for her son Maxwell's SLC6A1 diagnosis, and finally got the treatment administered in September, making history in the process.
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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.
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Tomorrow (December 2) is #GivingTuesday. We need your support to keep hope alive as we move into the next critical stage of the #UBA5 gene therapy program. Our fundraising is $2M to manufacture the therapy.
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Today marks the fourth anniversary of RSF and Raiden’s dad’s 40th birthday. Also, our 2025 End-of-Year Newsletter is live! 👉 Check it out: https://t.co/cTR9kJTaEy • Co-founder’s note • Research updates • Community highlights and more…
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Thank @FightRiseFGC for supporting us again this year! 💙⚡️
It's back! FightRise is honored to once again host its charity stream for the @RaidenScience Foundation: Wreck the Halls 3: Snow Mercy! A team battle format featuring special guests @ultradavid & @TongNeverSleeps Check the sweepstake prizes you can win: https://t.co/L1lTos0eIQ
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This is why we fight. For kids like Bryce and his family. Awareness brings support. Support drives research. Research brings hope. ❤️ Please consider supporting us for this GivingTuesday (12/2)
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This is why we fight. For kids like Carter and his family. Awareness brings support. Support drives research. Research brings hope. ❤️ Please consider supporting us for this GivingTuesday (12/2)
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Huge milestone for #UBA5 #genetherapy! The pre-IND package for the UBA5 gene therapy program has been submitted to the FDA. A major step toward the first-ever UBA5 treatment. Thank you to the incredible team @UMassChan and everyone who has supported us along the way.
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Congrats to Dr. Heather Mefford on being named the 2026 President-elect of @GeneticsSociety Dr. Mefford is one of the few researchers studying UBA5 disorder, leading critical work @StJudeResearch. We are grateful for her dedication and leadership pushing UBA5 research forward.
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November is National Epilepsy Awareness Month 💜 Epilepsy is not just a condition. It is fear, sleepless nights, and hoping you never have to watch another seizure. Many UBA5 warriors live with epilepsy. We do not give up. We keep pushing with love, science and hope.
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The Phams were featured in @Complex this weekend as they shared their family story and the mission of RSF. Over $17K from the Fight4Rare charity auction was raised last night for UBA5 research. A special thank you to @therealsaibot, for being such an amazing supporter!
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⏰ This Wednesday Only — Oct 29 🐼 Panda Express Virtual Fundraiser (Nationwide!) 💙 50% of sales support the Raiden Science Foundation ⚡️ Use code 𝐑𝐚𝐢𝐝𝐞𝐧 at checkout (online & app orders only) 🙏 Please continue to share!
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🚨 This Wednesday (10/29)! One day only, all Panda Express locations! @PandaExpress is hosting a virtual community fundraiser — 50% of online orders will support our research efforts💙⚡️ Order through the Panda Express website or app. 👉 Please share
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RT @Fight4Rare: Tune in this Sunday for our 🎃Spooktacular @StreetFighter 6 Avatar Battle Tournament! ⏰ Oct 26 • 2 PM PT 📺Tenomedia & teamsp…
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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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