Give kids suffering from UBA5 disease a chance to live a healthy life.
Joined February 2022
- Tweets 253
- Following 113
- Followers 254
- Likes 205
132 Photos and videos
Pinned Tweet
11 Feb 2025
🎧 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/rarediseasesrea…
#RareDiseases #UBA5 #RareDiseasesRealStories
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Raiden Science Foundation retweeted
Jun 6
$19,242 raised to support @RaidenScience

Thank you, @humble and @CapcomUSA_ for standing with us in the fight against rare disease.
Every dollar helps fund research snd advance potential treatments ❤️
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Thank you @KGWNews for sharing our story.
kgw.com/article/news/local/b…
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Raiden Science Foundation retweeted
Feb 28
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.
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Raiden Science Foundation retweeted
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 🎧
ALT Collage of images of the families featured in the Rare Diseases, Real Stories podcast, with text in the middle that says Rare Diseases, Real Stories Now streaming
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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
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Raiden Science Foundation retweeted
Feb 25
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
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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/mLVaVoT…
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Raiden Science Foundation retweeted
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
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🚨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…
#RareDisease #UBA5 #Awareness #Research #P4A2026 #community
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This is why we fight. For kids like Marko and his family.
Awareness brings support.
Support drives research.
Research brings hope.
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31 Dec 2025
Grateful beyond words. Because of our community, $135K raised in December to move UBA5 gene therapy one step closer to reality. Thank you. đź’™
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25 Dec 2025
🎄 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/ra…
#cryptoforgood #raredisease #genetherapy @givinblockdonor
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Raiden Science Foundation retweeted
15 Dec 2025
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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Raiden Science Foundation retweeted
14 Dec 2025
Live now! Tune in: twitch.tv/fightrisefgc
Shoutout to @ultradavid for the great intro about the @RaidenScience đź’™
@FightRiseFGC @TongNeverSleeps
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Raiden Science Foundation retweeted
12 Dec 2025
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
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Raiden Science Foundation retweeted
10 Dec 2025
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
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10 Dec 2025
The power of a determined parent and the power of gene therapy. Incredible story. ❤️
people.com/8-year-old-has-di…
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9 Dec 2025
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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1 Dec 2025
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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