My Nonprofit Reviews

Receiving a diagnosis of an ultra-rare, potentially life-threatening genetic disorder can feel pretty bleak. The Barth Syndrome Foundation is an invaluable resource for individuals living with Barth syndrome and their families.

I have been involved with the Barth Syndrome Foundation from the very beginning, watching it grow from a small network of concerned families, scientists and physicians to a non-profit organization with chapters around the world. I grew up with two younger brothers affected by Barth Syndrome and for a long time, we felt very isolated because we knew of no one else affected with this disorder. Since the Barth Syndrome Foundation came into being that isolation has gone away. We have this wonderful community where people can ask questions and share their experiences through the e-mail listservs or social media. We know so much more now about Barth Syndrome than we did when my brothers were little, or even ten years ago. We cheer on our boys when they've reached important milestones and accomplishments, and we embrace and comfort each other when one of our guys loses his fight with Barth Syndrome. There is support available for everyone touched by this disorder, from the diagnosed individuals to the parents and grandparents, from the siblings like myself to the scientists researching the disorder and physicians providing care for the individuals. It's incredible to be a part of this group, this "family."

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