Written by Megan Branagh

Happy Heart Week began in 2013, inspired by the Branagh family’s second son, Henry.

At just three months old, after slow growth and numerous tests, Henry was admitted to Children’s Hospital Oakland for failure to thrive. Within 24 hours, his family received devastating news—Henry was in serious heart failure. He was diagnosed with severe dilated cardiomyopathy, meaning his heart’s left ventricle was dangerously enlarged.

Henry spent the next five weeks in the paediatric ICU while doctors worked to stabilise his heart. Eventually, he was able to go home on oral medication, though the journey was far from over. Over the next year, Henry had twice-weekly cardiology appointments and was referred to the heart transplant team at Stanford’s Lucile Packard Children’s Hospital.

That year, Henry’s family gathered extended relatives and close friends for the 1st Annual Happy Heart Walk at the Lafayette Reservoir. The goal was simple yet deeply personal— to honor Henry and raise awareness of paediatric cardiomyopathy. At the time, Henry was a beautiful but very sick baby without a full diagnosis.

Despite stabilised heart function, many challenges and unknowns remained. Just before his first birthday, genetic testing revealed the underlying cause: Barth syndrome — an ultra-rare genetic mitochondrial disorder that primarily affects males and is characterised by cardiomyopathy, neutropenia (low concentration of neutrophils, a type of white blood cell), muscle weakness, growth delay, exercise intolerance, and extreme fatigue. At the time, only around 300 people worldwide were known to be living with Barth syndrome, with historically high mortality rates.

Though terrifying, the diagnosis brought clarity and direction. The Branagh family finally had answers and a renewed determination to face the road ahead. Barth syndrome is progressive and degenerative and there is still no approved treatment or cure. Yet.

Now in its twelfth year, Happy Heart Week has grown from that deeply personal beginning into a global tradition of awareness, support and action. Each year, it unites supporters of the Barth Syndrome Foundation (BSF) to raise vital funds and foster connection for families navigating this rare and life-limiting condition. What began as a volunteer-driven initiative now inspires people across the world to share stories, rally support online and contribute to advancing BSF’s mission.

Through these collective efforts, Happy Heart Week has helped fuel research, connect families with expert care and to each other, and strengthen a resilient and compassionate community.

In 2024, Happy Heart Week reached a major milestone—surpassing $1 million in cumulative funds raised since its inception. This achievement reflects not only incredible generosity but also years of shared dedication and countless acts of kindness that continue to drive progress.

A turning point: Elamipretide and the urgent need for treatment

For the first time ever, a potential treatment for Barth syndrome is within reach. Elamipretide, an investigational therapy that improves mitochondrial function, has demonstrated promising results. Many individuals who participated in the original trial continue to benefit from the drug more than eight years later. Additionally, others in acute cardiac distress have been granted access through emergency and expanded access pathways approved by the FDA, underscoring its critical role in care today.

In October 2024, the FDA’s Cardiovascular and Renal Drugs Advisory Committee voted 10–6 that Elamipretide was effective for treating Barth syndrome..

In April 2025, however, the FDA announced a second delay in making its final decision. The Barth Syndrome Foundation (BSF) expressed deep disappointment and guarded optimism, remaining hopeful that regulators are taking the necessary time for a thorough and thoughtful review. “This therapy has been in development for more than a decade, and for many living with Barth syndrome—including children receiving it under emergency access—it has offered real and lasting benefit,” shared Emily Milligan, BSF executive director. “We urge the FDA to stay focused, provide a clear new decision date, and approve this therapy for all Barth patients.”

Looking ahead: Happy Heart Week 2025

Despite these challenges, the  Happy Heart community remains hopeful and committed. 2025 promises even more opportunities to make an impact. A virtual event will take place May 12–19, 2025, featuring family stories, updates from researchers and supporters, and social media and fundraising challenges. Later in the year, the Happy Heart community will come together in person once again for the Happy Heart Party on September 27, 2025—a joyful follow-up to the last in-person celebration held during the 10th anniversary in 2022. This special gathering will offer a meaningful way to celebrate milestones, engage in awareness, and once again raise funds for the Barth Syndrome Foundation.

Together, year after year, Happy Heart Week turns hope into action. It is more than a fundraiser—it is a testament to the power of community and a reminder that even in the rarest of journeys, hearts everywhere can unite to make a lasting difference.

To follow along, contribute to Happy Heart Week, or grab some great HAPPY gear, visit happyheartweek.com.

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