​Celebrate Henry’s 14th birthday by helping kids like him not just survive—but thrive.

​Happy Heart Week | May 5–11 | A virtual fundraiser for the Barth Syndrome Foundation

Meet Henry 

Henry is a joyful, funny, and resilient 14-year-old who happens to live with Barth syndrome—an ultra-rare, life-threatening genetic disorder affecting only about 300 living individuals worldwide.​

For most of his life, there were no treatments.
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But because of this community, that is starting to change.

​A year that changed everything

In 2025, something extraordinary happened.

After years of advocacy and research, the first-ever treatment for Barth syndrome received FDA accelerated approval—the first approved therapy for any mitochondrial disease.

Together, through Happy Heart, we raised more than $320,000 to help make progress like this possible.

​But we’re not there yet

That treatment still requires full approval to ensure access for all who need it—and one treatment is not enough.

Families like ours are still waiting for more options, more answers, and more hope.
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Our work continues until every person with Barth syndrome has the chance not just to live—but to truly thrive.

Join Happy Heart Week 2026

May 5–11 is our annual week of awareness and fundraising—and our only fundraiser of the year.

While we’re pausing the in-person event, this virtual campaign brings our growing community together from across the country and around the world.

Throughout the week, we’ll share updates on Henry, stories from our community, and the real impact of what we can accomplish together.

How you can make an impact

  • Give — Every donation helps advance research and support families
  • Sponsor — Power the week and amplify awareness
  • Share — Help us reach more people who can make a difference

​Your impact

Your support helps:
  • Advance critical research and the path to full treatment access
  • Fund new therapies and future breakthroughs
  • Support families living with Barth syndrome
  • Strengthen advocacy and global collaboration
With only about 300 individuals worldwide living with this condition, every effort matters.
Every gift makes a real difference.

​A community that shows up

Last September, we gathered to celebrate a milestone we once only hoped for. It was a night filled with joy, relief, and gratitude—and we are still carrying that with us.
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Now, we keep going.

​Be part of what comes next

Progress is happening—but it depends on all of us.

Join us for Happy Heart Week and help build a brighter future for families like ours.
Every gift makes a difference
Help power the entire week