The Power of Connection

Every connection strengthens our community. Every connection creates new possibilities.

This Giving Tuesday, December 1, join the Barth Syndrome Foundation (BSF) in celebrating the connections that bring our community together, move research forward, and help create a brighter future for everyone impacted by Barth syndrome.

Barth syndrome is an ultra-rare, life-threatening genetic condition that primarily affects boys and men. For those living with Barth syndrome and the people who love them, finding others who understand can make all the difference.

But connection reaches far beyond families.

It's an individual living with Barth syndrome meeting someone who shares their experiences. A sibling finding friends who understand their unique perspective. A researcher sitting down with the very people their work is meant to help. Clinicians sharing knowledge. Advocates working together to make sure our community's voice is heard. And partnerships with other rare disease and mitochondrial disease organizations that extend our reach around the world.

These connections are at the heart of everything we do.

For more than two decades, BSF has helped bring people together across families, research, medicine, advocacy, and the broader mitochondrial disease community.

Together, we've seen what these connections can make possible.

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.

Behind these milestones are years of shared knowledge, collaboration, determination, and relationships that continue long after a research study, meeting, or Conference ends.

And while we've made incredible progress, there is still more work to do and more connections to build.

Because connection isn't just something we celebrate. It's how we move forward.

Your Support Makes More Connections Possible

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

Connect individuals and families: Create opportunities for people living with Barth syndrome, parents, siblings, and loved ones to build friendships, share experiences, and find meaningful support.
Connect research with lived experience: Bring researchers, clinicians, and affected individuals together to share knowledge, inform research, and advance our understanding of Barth syndrome.
Connect voices and strengthen advocacy: Unite individuals, families, and advocates to raise awareness and improve access to treatments, care, and resources.
Connect communities across borders: Build relationships with other rare disease and mitochondrial disease organizations to share resources, strengthen partnerships, and expand our collective impact.
Connect today's efforts with tomorrow's possibilities: Sustain the collaboration, research, education, and community support that help move our mission forward.

Be Part of What's Next

Some of the most meaningful moments in our community begin with a simple connection.

A conversation between two parents. A friendship between individuals who share the same rare diagnosis. A sibling realizing someone else understands. A researcher finding new perspective through the people they hope to help.

These moments matter. And they are made possible through the generosity of people who believe in this community.

This Giving Tuesday, help us make more connections possible.

Whether you make a donation, create a fundraising page, or share our mission with others, you're helping strengthen the relationships and opportunities that will carry the Barth syndrome community forward.

Because connection makes progress possible. And together, we can make so much more possible.

Giving Tuesday 2026

The Power of Connection

Team Members