My Nonprofit Reviews

When we learned that our son had Barth syndrome, we were utterly terrified. The little amount of research we had done showed us just how rare the disease is and we were afraid we would be able to find very little support in caring for him. Almost none of his doctors had ever heard of it! But then we discovered the Barth Syndrome Foundation and their community listerv. We were encouraged to attend the upcoming bi-annual conference for both families and medical professionals. What we discovered was an organization centered around the families of affected individuals. We were welcomed with open arms by complete strangers. Being able to meet and talk one-on-one with the leading doctors and researchers of Barth syndrome was helpful beyond measure. The Foundation is exceptionally passionate about getting the word out about Barth syndrome and making sure that the community is supported not only by its members but also by the doctors working hard to find a cure.

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