Why We Created the TUBA1A Foundation

After years of searching for answers, feeling alone, and connecting with families who shared similar stories, we realized something important:

The TUBA1A community needs a central place for connection, support, and hope.

In 2025, we created the TUBA1A Foundation with a mission to:
-Provide clear, understandable information for families
-Connect parents to supportive communities
-Educate medical professionals on TUBA1A
-Support research and awareness
-Advocate for improved resources and services and make sure no family faces this rare diagnosis alone

We want to build the resource we desperately needed when we first heard the words “TUBA1A mutation.”

How Your Donation Helps

Your support will help us:
💙 Build educational materials and family-friendly guides
💙 Create a centralized website with resources and support
💙 Connect families across the world
💙 Support research initiatives and partnerships
💙 Host awareness events and virtual meetups
💙 Provide toolkits for newly diagnosed families
💙 Give hope to parents facing the fear and uncertainty we once lived through

Every dollar makes a real, tangible difference for a family navigating this rare condition.

Your donation helps build a future where every TUBA1A family feels informed, supported, and never alone.

From the bottom of our hearts—
Thank you for supporting this mission.
And thank you for helping us build hope where there once was none.

💙 Donate. Share. Advocate.
Together, we can make a difference.

TUBA1A Foundation Fundraiser