The Happy Heart Party 2025 was truly a night to remember! What an unforgettable evening it was—celebrating with old and new friends, surrounded by laughter, love, and hope. The awareness shared and the funds raised that night mean the world to our family and to the entire Barth syndrome community. Thanks to the incredible generosity of the Happy Heart community, collectively we’ve raised an astounding $300,000 so far in 2025 for the Barth Syndrome Foundation. These gifts fuel research, connect families, and help move us closer to real, accessible treatments for kids like Henry. THANK YOU to all that helped make this party a beautiful success!
And, we were able to celebrate the approval of the first treatment for Barth syndrome! Elamipretide was approved under accelerated approval by the FDA on September 19th, 2025. This is a monumental milestone, and we are incredibly relieved. However, much work is still to be done on the required post-approval trial and on making sure all have access to this life-giving and life-saving medication. We wouldn't be here today without the years of support from the Happy Heart community ~ THANK YOU!
And, we were able to celebrate the approval of the first treatment for Barth syndrome! Elamipretide was approved under accelerated approval by the FDA on September 19th, 2025. This is a monumental milestone, and we are incredibly relieved. However, much work is still to be done on the required post-approval trial and on making sure all have access to this life-giving and life-saving medication. We wouldn't be here today without the years of support from the Happy Heart community ~ THANK YOU!
Many of you have supported us for years, and we are beyond grateful. Thank you for your loyalty and compassion on this cause.
PRESENTING Sponsor: Branagh Construction
HAPPY Sponsors: Basco Drywall & Painting, Branagh Development, JBL Home Ranch
HOPE Sponsors: Bay City Mechanical, Diablo Valley Cabinetry, Legacy Risk & Insurance, Pacific Galvanizing, Nick Tarrab & UBS
FACT and COMMUNITY Sponsors: Diablo Valley Cabinetry, Julie Fiske Realty; The Bauer Family, Canyon Club, The Hideout Kitchen, Porsche Walnut Creek, Rudney Associates, Stanford Children’s Health
PRESENTING Sponsor: Branagh Construction
HAPPY Sponsors: Basco Drywall & Painting, Branagh Development, JBL Home Ranch
HOPE Sponsors: Bay City Mechanical, Diablo Valley Cabinetry, Legacy Risk & Insurance, Pacific Galvanizing, Nick Tarrab & UBS
FACT and COMMUNITY Sponsors: Diablo Valley Cabinetry, Julie Fiske Realty; The Bauer Family, Canyon Club, The Hideout Kitchen, Porsche Walnut Creek, Rudney Associates, Stanford Children’s Health
HAPPY Swag
Grab a limited edition HAPPY hat!
Or a beautiful hand-tied wreath with happy heart bells, the perfect hostess gift for this holiday season.
All profits go straight to the Barth Syndrome Foundation—so you’re not just shopping, you’re changing lives.
But don’t wait… once they are gone, they are gone.
(Heads up: some items are local pickup only, or may require shipping coverage. Thanks for understanding!)
Or a beautiful hand-tied wreath with happy heart bells, the perfect hostess gift for this holiday season.
All profits go straight to the Barth Syndrome Foundation—so you’re not just shopping, you’re changing lives.
But don’t wait… once they are gone, they are gone.
(Heads up: some items are local pickup only, or may require shipping coverage. Thanks for understanding!)
2025 Happy Heart Week ~ Monday May 12th - Monday May 19th
Henry turned 13 on May 2nd, and as always, his birthday was a meaningful celebration of life, love, and gratitude especially in light of his journey with Barth syndrome. For the 13th year in a row, we honored his life and the lives of others affected by this rare disease through Happy Heart Week, held virtually from May 12–19. Thanks to your incredible generosity, HHW 2025 raised $88,000 for the Barth Syndrome Foundation, bringing our total impact to over $1.1 million. These funds directly support BSF’s ongoing research, advocacy, and progress toward a treatment or cure—because right now, there is still none. We are so grateful for your continued support, for walking this journey with us, and for cheering Henry on through every triumph and challenge. Donations can be made directly to the Barth Syndrome Foundation and are tax deductible—every dollar is deeply appreciated and put to meaningful use.
As always, thank you for your prayers, care, concern, love, and continued support. We are forever indebted and grateful to this beautiful community!
With Thankful and Happy Hearts,
John, Meg, Grady, Henry, Wes and Georgie Branagh
With Thankful and Happy Hearts,
John, Meg, Grady, Henry, Wes and Georgie Branagh
