2021 Happy Heart Week ~ Monday May 3rd - Monday May 10th
Happy Heart Friends and Family! The 9th Annual Happy Heart Week 2021 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 NINE! 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 9th 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, Monday May 3rd through Monday May 10th. 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 tremendous strides have been made on the road towards a treatment or cure, we are not there yet. Your support and donations are critical in helping us get there! More information on the status of clinical trials and FDA approval of drugs for the treatment of Barth syndrome will be coming your way during Happy Heart Week. Thank you for coming alongside us on this journey, cheering Henry on as he thrives and struggles, and making a difference in our lives and the lives of those affected by this difficult disease.
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, even with the setbacks of the pandemic, BSF has accomplished so much. They have helped move the results from the clinical trials through FDA and continue to fight tirelessly for approval. They have hosted virtual webinars and roundtables that have proved beneficial to our family and the community at large. Even though our in person family and medical conference was cancelled due to Covid, BSF hosted a global SciMed Symposium in which hundreds of presenters shared and collaborated to continue the conversations and research being conducted around the world. And just last month, BSF awarded the new grants for this coming year. Exciting and pivotal, to say the least.
I will be sharing more info on all of this during HHW2021. The research necessary for these clinical trials and treatments to come to fruition and for all of the other important work BSF is doing, is helped funded with the money we (as in HHW) raise. Thank you!
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-mail list so that you don't miss a thing. And all donors will receive the 2021 Henry Card. That alone is a reason to donate :)
Henry’s birthday is May 2nd. He is turning NINE! 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 9th 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, Monday May 3rd through Monday May 10th. 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 tremendous strides have been made on the road towards a treatment or cure, we are not there yet. Your support and donations are critical in helping us get there! More information on the status of clinical trials and FDA approval of drugs for the treatment of Barth syndrome will be coming your way during Happy Heart Week. Thank you for coming alongside us on this journey, cheering Henry on as he thrives and struggles, and making a difference in our lives and the lives of those affected by this difficult disease.
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, even with the setbacks of the pandemic, BSF has accomplished so much. They have helped move the results from the clinical trials through FDA and continue to fight tirelessly for approval. They have hosted virtual webinars and roundtables that have proved beneficial to our family and the community at large. Even though our in person family and medical conference was cancelled due to Covid, BSF hosted a global SciMed Symposium in which hundreds of presenters shared and collaborated to continue the conversations and research being conducted around the world. And just last month, BSF awarded the new grants for this coming year. Exciting and pivotal, to say the least.
I will be sharing more info on all of this during HHW2021. The research necessary for these clinical trials and treatments to come to fruition and for all of the other important work BSF is doing, is helped funded with the money we (as in HHW) raise. Thank you!
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-mail list so that you don't miss a thing. And all donors will receive the 2021 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