Every connection strengthens our community. Every step forward brings new possibilities.

This Giving Tuesday, December 1, join the Barth Syndrome Foundation (BSF) as we celebrate the power of progress and connection—and the difference we can make together.

Barth syndrome is an ultra-rare, life-threatening genetic condition that primarily affects boys and men. For individuals and families navigating this diagnosis, the journey can be filled with uncertainty. But through the strength of a deeply connected global community, no one has to face it alone.

For more than two decades, BSF has brought families, researchers, clinicians, and advocates together with a shared purpose: to improve the lives of those affected by Barth syndrome.

And together, we've made remarkable progress.

In 2025, our community celebrated a historic milestone with the FDA's first approval of a treatment for Barth syndrome. In 2026, more than 300 people gathered at our International Scientific, Medical & Family Conference, including 46 individuals living with Barth syndrome and more than 90 researchers, clinicians, and healthcare professionals.

These milestones represent years of dedication, collaboration, and the belief that a better future is possible.

But progress is more than a scientific breakthrough.

It's a newly diagnosed family finding someone who understands. It's a researcher connecting with the people behind their work. It's an advocate making sure the voices of our community are heard. And it's the friendships, encouragement, and support that remind families they are never alone.

Connection makes progress possible. And progress creates new opportunities for connection.

Your Support Moves Our Mission Forward

When you make a gift to BSF, you're helping us:

Advance research and treatment: Support scientific discoveries and continued efforts to improve care and treatment options.
Bring families together: Create opportunities for individuals and families to connect, share experiences, and find support.
Amplify community voices: Strengthen advocacy efforts that help improve access to treatments and care.
Build on our progress: Continue working toward a world where everyone impacted by Barth syndrome can thrive and live the life they choose.

Be Part of What's Next

We've come a long way, but there is still so much more to accomplish.

Every discovery, every meaningful connection, and every step forward is made possible by people who believe in this community.

This Giving Tuesday, help us build on the progress we've made and strengthen the connections that will carry us forward.

Whether you make a donation, create a fundraising page, or share our mission with others, you are part of something bigger.

Because progress is possible when we move forward together.

Giving Tuesday 2026

Progress Through Connection

Team Members