My Nonprofit Reviews

This organization is so beneficial to anyone affected by Barth syndrome, not only individuals but families as well. A wealth of information at your fingertips and someone who will answer your questions anytime you ask. I have met so many lifelong friends!

I have been involved with this organization for 20 years. The have helped me immensely in raising my son and keeping him as healthy as I can. They are an extension of my family. Always willing to help no matter what time of day or the distance between us. Greatest group I have ever been a part of.

I have been involved with BSF since it's beginning. I don't know what I would do without it. So much support and knowledge from a great group of parents, doctors, therapists, scientists and many other people. So many people working together to help people with Barth syndrome find a treatment or cure.

After losing one son to Barth syndrome I was determined not to lose another. Finding the three women who were looking for others whose children had Barth syndrome was one of the luckiest days of my life. They arranged a meeting and people from all over the world came. Barth Syndrome Foundation was formed. Seventeen years later we are doing clinical trials on potential drug therapies. Amazing! My son and many others will have a better future because of this foundation. I am honured to be a part of the Board of Barth Syndrome Foundation of Canada, an affiliate of Barth Syndrome.

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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