This is why we show up.
Celebrate Henry’s 14th birthday by helping kids like him not just survive—but thrive.
Join Us
This May, we’re celebrating Henry with our annual virtual week of awareness and fundraising. While we’re pausing the in-person event this year, our mission is stronger than ever.
Your support helps:
• Advance critical research and the path to full treatment access
• Fund new discoveries and future therapies
• Support families living with Barth syndrome
• Strengthen advocacy and global community efforts
With only ~300 individuals worldwide living with Barth syndrome, every effort matters. Every gift makes a real difference.
Consider becoming a Sponsor to further the impact of your gift.
Address to send donations by mail: Barth Syndrome Foundation, PO Box 419264 Boston, MA 02241-9264
What a year 2025 was for Happy Heart and the Barth syndrome community.
Together, we raised more than $320,000 for the Barth Syndrome Foundation, helped bring awareness to thousands, and witnessed a historic milestone: the first-ever approved treatment for Barth syndrome. Just days later, we gathered to celebrate at the Happy Heart Party—a night filled with joy, relief, and hope we’ll never forget.
But we’re not done.
That treatment still requires full approval to ensure access for all, and that approval unfortunately depends on yet another trial. And more options are urgently needed. Our work continues until every person with Barth syndrome has the chance not just to survive—but to truly thrive.
Thank you for joining our family in this mission!
John and Meg Branagh
happyheartweek@gmail.com