I received a phone call from the Family Services Director of the BSF the same day my wife and I registered online with the foundation. Our 19 month-old son was officially diagnosed the day before, and we felt as if our lives (and his) were turned upside down. We were scared and unsure of the future. That call made a big difference, and since then, the BSF has continued to exceeded my expectations in every way possible. Its Board of Directors, it's employees and its members are all working together to help find a cure and to make life for those who deal with Barth Syndrome better. Their biennial Family and Medical Conference literally sets the standard for other such events. I can’t truthfully imagine my life now without the BSF’s involvement. We are huge fans.