Raiden Science Foundation

???? Huge Friday Announcement! ???? We’ve got an exciting #Run4Raiden sign up challenge! For every new registration, $10 will be donated to our campaign, up to $5,000! ?? ??♀? Sign up here: https://lnkd.in/g_46fuJB ? When you sign up, be sure to check the box that says "Bonus $10." Registration is FREE! Let's spread as much awareness as possible about #UBA5, get out there, be active, and stay healthy. Don't forget to snap a photo of yourself doing the 5K and share it with us! Please #share this announcement with your friends and family! And don’t forget the matching challenge is still active! Let’s keep the momentum going!

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 better understand diseases like UBA5 disorder. We are featured in the article. Baylor College of Medicine https://lnkd.in/g3WtmCyQ

?? 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 ?? ??♀? https://lnkd.in/ecKJs2gp

?? Last week, we kicked off our first newsletter of 2025! If you missed it, check it out here: https://lnkd.in/g_PZJQYc Stay in the loop on all things Raiden Science Foundation—including research progress and upcoming events! Sign up today by visiting www.raidenscience.org ???? The subscribe button is at the bottom of the page.

?? Rare Disease Day Announcement! ?? We're thrilled to announce that we will be funding another year of efficacy studies for the UBA5 Gene Therapy Program at UMass Chan Medical School, led by Dr. Toloo Taghian. This brings us one step closer to making a gene therapy for UBA5 a reality. A huge thank you to everyone who has supported us on this journey—this wouldn’t be possible without you! ?? #RareDiseaseDay #UBA5 #GeneTherapy #Research #Hope

Today is Rare Disease Day—an important reminder that millions of families, including ours, fight every day for awareness, support, access to care & treatment, research, and, above all, compassion. #RareDiseaseDay #UBA5

We’re joining the 25 Million Wishes campaign to celebrate the unique lives of children with rare diseases and their families through awareness, action, and research. #25Mwishes #RareDiseases Learn more: 25millionwishes.org ? Thank you The Rare Village Foundation for leading this amazing movement!

One year ago today, Raiden’s story landed on the moon. ??? On February 22, 2024, as part of the Lunarprise mission, Raiden’s story became part of history—onboard NASA’s first return to the moon since 1972. Maybe it was just coincidence, or maybe it was fate, but this moment happened just days before Raiden’s birthday (2.26) and Rare Disease Day (2.28)—making it even more meaningful to our family and foundation. A huge thank you to Space Blue Club for making this possible. Not only does it ensure Raiden’s story will be seen for generations, but it also serves as a symbol of hope and possibilities. Just as space exploration continues to push the boundaries of what’s possible, medical innovation—like gene therapy—is bringing new hope to families facing rare diseases. Our hope is that Raiden’s story on the moon inspires more awareness, more research, and more kindness in the world. Because together, we can make the impossible possible. ???? #DearRaiden #UBA5 #Lunarprise #RareDisease #GeneTherapy #Hope #Moon

Original post from UMass Chan Medical School: ?? Listen and learn how the relentless determination of Tommy and Linda Pham and their partnership with UMass Chan Medical School could pave the way for gene therapy advancements: https://direc.to/mqFa Linda and Tommy Pham established the Raiden Science Foundation in 2021 to support UBA5 research at UMass Chan after their son Raiden was diagnosed with the ultra-rare disease. Patients experience muscle floppiness as well as stiffness, seizures and poor head control. “We honestly don’t want another family to go through what we went through.?So if we can help in any way, that’s a win for all of us,” Linda Pham said on the Rare Diseases, Real Stories podcast. The Phams’ story is one of six in our special podcast series. #RareDiseasesRealStories #RareDiseases #podcast #RareDiseaseMonth #RareDisease #GeneTherapy