Happy Heart Week

6th Annual Happy Heart Week 2019

Henry’s birthday is May 2nd. He is turning SEVEN! Birthdays are always such a sweet celebration. But, even more to us now, birthdays remind us in a very literal way of our gratefulness for each breath everyday and our time together here on earth. For Henry’s 7th birthday, we are going to celebrate his beautiful life; his challenges with Barth syndrome; the other boys and men suffering from this disease and their families; and the great work the Barth Syndrome Foundation is currently doing to help find a treatment or cure. This virtual celebration will happen the whole week after Henry’s birthday, Sunday, May 5th through Saturday, May 11th. Through an email and social media campaign, we are hoping to raise great awareness around Barth syndrome and exceed the amount that we collectively raised last year, $73,000!

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