I was honored this Fall to be asked to write an article about Henry and the start of the Happy Heart Walk. The Barth Syndrome Foundation is the sole organization to support Barth Syndrome and the families affected. They are also solely responsible for the funding of research to help find treatment. The Foundation has been very supportive of us, and has done a phenomenal job in providing our family, along with all of the others affected, with the medical advice and research that is so very crucial in the daily life of Henry and others like him. After Henry's diagnosis, we decided that we would help with fundraising efforts for BSF, so the 2014 Happy Heart Walk benefited them, as will the 2015 event.
Click here to see the article. Henry is featured on page 17. Feel free to read through the Journal to hear about what the Foundation is up to, and to meet some of the other boys and men affected by Barth Syndrome.
Barth Syndrome Foundations website: https://www.barthsyndrome.org/home