My Nonprofit Reviews

I would be totally lost without the advice, support and knowledge of this group. In the 16 years since it was decided to establish the foundation we are already heading into clinical trials to treat this horrible syndrome. Thank you to everyone involved

I do not know where I would be without the foundation. They have helped me numerous times with advice about my son that has made a difference in his care. The foundation is actively looking for a treatment or cure for Barth syndrome and I am confident they will find one.

This is an amazing charity that helps families with a diagnosis of Barth syndrome. There is always someone willing to talk with you about their experiences or just lend and ear.The number of physicians and scientists who volunteer their time to come to our conference and explain the research they are doing to find a cure and help those affected by Barth syndrome is amazing. I can't imagine how different our lives would be without this foundation, they have saved my son and given me hope for his future.

This is an amazing charity that helps families with a diagnosis of Barth syndrome. There is always someone willing to talk with you about their experiences or just lend and ear. The advancements they have made in research since its inception in amazing. I can't imagine being on this journey without the support of the foundation and all its members.

BSF is the example to follow when setting up a Foundation. What they have accomplished in 11 years is remarkable. The knowledge and resouces available to families is excellent anf you won't find a tighter knit community than BSF. The willingness of the doctors and scientists who volunteer their time to help families anywhere in the world is amazing!

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Without the BSF my son would probably not be as healthy as he currently is. We have learned from experts that we would have never met before the foundation existed. It is the most sharing, giving, insightful, and caring group I have ever belonged to. It has given me hope that my granddaughters, who could be carriers of BTH, will never have to go through what my sons and family have. We are a fighting a disease that is very rare but we will win!

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