Life with the UBA 5 Gene Mutation

05/31/2026

Download the sponsorship form here:

05/30/2026

Did you know that once we cover the direct costs associated with the walk, all proceeds go DIRECTLY into our foundation fund? This fund is dedicated to supporting UBA5 research. Since our foundation is entirely volunteer-run, your contributions go straight to helping UBA5 families, not towards overhead expenses! If you know of a company that would be interested in supporting our walk and cause, please reach out to us at [email protected].

05/14/2026

WE ARE LOOKING FOR SPONSORS!! Who do you know who wants to support an awesome cause?? Send them our way. Email us at [email protected]

04/20/2026

Mark your calendars for the 2026 UBA5 Awareness Walk! You don't want to miss it!

11/20/2025

11/08/2025

Great news from the Raiden Science Foundation!

🚨An important milestone for the Raiden Science Foundation and UBA5 community!

We are excited to share that the pre-Investigation New Drug (pre-IND) meeting request and briefing package have been submitted to the FDA for the UBA5 gene therapy program. This is a significant step as we work toward the first-ever treatment for UBA5 disorder.

We are deeply grateful for the dedication of the research and clinical teams at UMass Chan Medical School, as well as for our community and donors whose belief and support make progress like this possible.

ℹ️ What does this mean:

A pre-IND submission is an early part of the regulatory process where researchers share data, plans, and questions with the FDA to receive guidance. It helps ensure that the trial design, safety studies, and manufacturing plans meet regulatory expectations as we move toward the clinical trial.

Hope. Science. Community.
We keep going. 💙⚡️

09/01/2025

The results are in....

08/29/2025

Have a great Friday!

08/24/2025

We're thrilled to have successfully concluded our 7th annual UBA5 Awareness Walk, an inspiring event that united us in support of our brave warriors. Whitney & Connor's courageous UBA5 story left a lasting impact on us, and the weather cleared just in time for our walk. Thank you to each and every person who took time out of their schedules to support our mission. Also thank you to our sponsors for making event successful.

08/23/2025

Registration starts at 8am! We can’t wait to see you there.