This is Henry. He is a joyful, funny, and thriving teenager who lives with Barth syndrome. What you don’t always see are the layers behind that—how this condition affects multiple systems in the body, including the heart, muscles, immune system, growth, and energy levels.

No two individuals experience Barth syndrome the same way. And because of that, no single treatment can address every symptom, or work for every person.

There has been meaningful progress, including a recently approved treatment. But that progress is not the finish line. Approval is contingent on further study, and one therapy does not solve for the full complexity of the disease. Barth syndrome is ultra-rare. And yet, what is learned through it has far-reaching impact, especially for mitochondrial diseases and the broader rare disease community.

For more than two decades, the Barth Syndrome Foundation has helped lead that progress--advancing research, partnering with the FDA, and demonstrating what is possible when a small community drives meaningful change.
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When you support Happy Heart Week, you are part of that momentum.

 Make a Direct Impact

A donation is one of the most meaningful ways to move this work forward.
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Your support helps:
Advance research
Support families
Expand awareness
Continue progress beyond a single treatment

​Ways to Participate

Awareness grows through everyday moments: conversations, sharing, and showing up.
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There are simple ways to take part and help more people understand Barth syndrome.

Partner as a Sponsor

Sponsors help expand the reach and impact of Happy Heart Week.
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Their support strengthens awareness efforts and helps drive continued progress across research and advocacy.
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Wear HAPPY Heart

Wearing Happy Heart Week helps carry awareness into the world.
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Each conversation it sparks helps more people see and understand this community.
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Shirts are available May 5–11. Additional items are available while supplies last.

Why It Matters

Barth syndrome may be rare, but the work surrounding it is not small.
Research in Barth syndrome is helping deepen understanding of mitochondrial function—impacting not only this condition, but many others.
There is real progress to recognize.
But there is still more to do.
More to understand.
More treatments to develop.
More families to support.

Thank you for being part of what comes next!