2020 Happy Heart Week ~ Sunday May 3rd - Saturday May 9th
Happy Heart Friends and Family! The 8th Annual Happy Heart Week 2020 is just around the corner! This special week will look just like it did in years past, a virtual fund and awareness raising campaign for Barth Syndrome, centered around Henry's birthday.
Henry’s birthday is May 2nd. He is turning EIGHT! 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 8th 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 find a treatment or cure. This virtual celebration will happen the week just after Henry’s birthday, Sunday May 3rd through Saturday May 9th. Through an email and social media campaign, we are hoping to raise awareness around this disease and raise important funds for the Barth Syndrome Foundation.
While the world as we all knew it just one short month ago is drastically different, much is still the same. As we debated whether or not to do Happy Heart Week this year in light of the coronavirus, we ultimately decided that we must. Henry is still here; he is thriving! And that will not be taken for granted. We must celebrate his life and journey, just like we have every other year! But, he still has Barth syndrome; he still needs a treatment or cure. And for those reasons, Happy Heart Week 2020 will go on.
All donations can be made directly to the Barth Syndrome Foundation and will be tax deductible. We can assure you, the money will be extremely well used and is so, so greatly appreciated. Over the past year, the Barth Syndrome Foundation has helped complete a successful clinical trial that we are eagerly awaiting information on from FDA, has helped with another clinical trial currently underway, and is involved with a plan involving treatment through gene therapy. I will be sharing more info on this during HHW2020. Exciting, to put it mildly, as this is the first time Barth Syndrome has had any treatments anywhere near this stage. And the research necessary for these clinical trials and treatments to come to fruition is helped funded with the money we (as in HHW) raise. Our everyday hope and prayer is for a long and vibrant life for Henry, and this will only be possible with a treatment or cure, and ultimately through the grace of God.
Please let us know if you have any questions! And we would so appreciate you sharing our cause with your networks! Find and “like" the Happy Heart Walk page on Facebook and Instagram, and watch for some informative and exciting posts in the coming days! Please make sure you are subscribed to our e-mailing list so that you don't miss a thing. And all donors will receive the 2020 Henry Card. That alone is a reason to donate :)
Henry’s birthday is May 2nd. He is turning EIGHT! 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 8th 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 find a treatment or cure. This virtual celebration will happen the week just after Henry’s birthday, Sunday May 3rd through Saturday May 9th. Through an email and social media campaign, we are hoping to raise awareness around this disease and raise important funds for the Barth Syndrome Foundation.
While the world as we all knew it just one short month ago is drastically different, much is still the same. As we debated whether or not to do Happy Heart Week this year in light of the coronavirus, we ultimately decided that we must. Henry is still here; he is thriving! And that will not be taken for granted. We must celebrate his life and journey, just like we have every other year! But, he still has Barth syndrome; he still needs a treatment or cure. And for those reasons, Happy Heart Week 2020 will go on.
All donations can be made directly to the Barth Syndrome Foundation and will be tax deductible. We can assure you, the money will be extremely well used and is so, so greatly appreciated. Over the past year, the Barth Syndrome Foundation has helped complete a successful clinical trial that we are eagerly awaiting information on from FDA, has helped with another clinical trial currently underway, and is involved with a plan involving treatment through gene therapy. I will be sharing more info on this during HHW2020. Exciting, to put it mildly, as this is the first time Barth Syndrome has had any treatments anywhere near this stage. And the research necessary for these clinical trials and treatments to come to fruition is helped funded with the money we (as in HHW) raise. Our everyday hope and prayer is for a long and vibrant life for Henry, and this will only be possible with a treatment or cure, and ultimately through the grace of God.
Please let us know if you have any questions! And we would so appreciate you sharing our cause with your networks! Find and “like" the Happy Heart Walk page on Facebook and Instagram, and watch for some informative and exciting posts in the coming days! Please make sure you are subscribed to our e-mailing list so that you don't miss a thing. And all donors will receive the 2020 Henry Card. That alone is a reason to donate :)
As always, thank you for your prayers, care, concern, and continued support. We are forever indebted and grateful!
With Thankful and Happy Hearts,
John, Meg, Grady, Henry, and Wes Branagh
With Thankful and Happy Hearts,
John, Meg, Grady, Henry, and Wes Branagh
Disneyland 2018