Raiden Science Foundation

Give kids suffering from UBA5 disease a chance to live a healthy life.

[Raiden Science Foundation @RaidenScience]

🎧 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

[Raiden Science Foundation @RaidenScience]

@TeamSupersaurus @CONEY @TKbreezy @EEvisu Thanks for supporting us! ❤️ #Fight4Rare

[Raiden Science Foundation @RaidenScience]

We’re grateful to @thermofisher for supporting the RSF as we advance our UBA5 gene therapy program toward manufacturing. Their support is helping us access a specialized cell platform for our AAV9 production.

Thank you to the Thermo Fisher ❤️

[Raiden Science Foundation @RaidenScience]

🚨 MAJOR MILESTONE for the Raiden Science Foundation!

The FDA has granted Rare Pediatric Disease Designation to our investigational UBA5 gene therapy program.

Another important regulatory milestone as we work to advance UBA5 gene therapy toward the clinic.

[Raiden Science Foundation @RaidenScience]

We’re proud to welcome Chris Andon as our Executive Director.

Chris has been part of Raiden’s journey since before RSF existed and has been instrumental in advancing our mission. In this role, he’ll help lead our UBA5 gene therapy program toward the clinic.

[Raiden Science Foundation @RaidenScience]

We’re excited to welcome Dr. Brandon Henry as Chief Drug Development Officer of the Raiden Science Foundation.

Dr. Henry is helping lead our next stage of UBA5 gene therapy development. We’re incredibly lucky to have him on this journey.

[Raiden Science Foundation @RaidenScience]

We’re excited to introduce Aurelix Bio, a key part of the team helping move our UBA5 gene therapy toward the clinic.

Their expertise in drug development and regulatory strategy is helping us navigate this next stage.

[Raiden Science Foundation @RaidenScience]

Excited to share that the Raiden Science Foundation has partnered with Citizen Health to bring new AI powered tools and resources to the UBA5 community.

[Raiden Science Foundation @RaidenScience]

We have some exciting updates to share this month! From research and new team members to partnerships and fundraising, there’s a lot happening at the Raiden Science Foundation.

Stay tuned!

[Raiden Science Foundation @RaidenScience]

Five years ago today, Raiden was diagnosed with UBA5 disorder. It was the day that changed everything and the beginning of a journey the Phams never expected.

What started with two parents searching for answers became RSF and a fight to create hope where there was none.

[Fight4Rare @Fight4Rare]

The Evo Collection on @humble has been extended for another week!

Thank you @ArcSystemWorksU for your continued support of the @RaidenScience. We couldn’t be more grateful. ❤️ #Fight4Rare

$100K raised and counting!

[Fight4Rare @Fight4Rare]

Guilty Gear joins the fight against RARE

💙 Ignite Hope. ❤️ Drive Cures.

A special promotion supporting #Fight4Rare begins 06.26.2026

Let's Rock @ArcSystemWorksU

#RareDisease #ArcSystemWorks #RaidenScienceFoundation

[Fight4Rare @Fight4Rare]

$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 ❤️

[Raiden Science Foundation @RaidenScience]

Thank you @KGWNews for sharing our story.

https://t.co/v8PVzJZ8Io

[St. Jude Research @StJudeResearch]

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.

[UMass Chan Medical School @UMassChan]

Today is #RareDiseaseDay. Families of children with rare diseases are featured on @UMassChan’s six-episode Rare Diseases, Real Stories podcast. Listen: https://t.co/gvrJoOeiye

#RareDiseasesRealStories #RareDiseases #podcast @RareDiseaseDay @RiaanResearch @RaidenScience @UMass 🎧

[Raiden Science Foundation @RaidenScience]

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

[St. Jude Research @StJudeResearch]

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. https://t.co/JbPX9pqtH4

[Raiden Science Foundation @RaidenScience]

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.

https://t.co/RFK316V8K7

[Raiden Science Foundation @RaidenScience]

@Fight4Rare Part of our nomination video. Check it out. Thank you everyone.

[Raiden Science Foundation @RaidenScience]

@UMassChan ❤️