BSF is both as a family, loving, helpful and supporting, and as a huge source of information. Even if our son is affected by a rare disease, we never feel alone, and BSF give us the strenght to live with Barth Syndrome, and give us hope that the future of our kids will be brighter
Our son had a tentative diagnosis at the age of 2 but for years we knew of no other living child with Barth syndrome. It was a lonely and terrifying time. The Barth Syndrome Foundation has created a community of families who provide support and learning to each other. Even better, BSF has funded research into the causes and potential cures for this deadly disorder. Our son lived for almost three decades before Barth syndrome took him from us, but since BSF has been around we never felt lonely and we never lost hope for a cure. This organization is a model for rare disorders and those who suffer from them!! Thank you, BSF!
Our son is one of the older people surviving with Barth syndrome in the world. Until BSF was created literally no one knew about this disorder including the Docters treating my son, and of course our friends and family had no idea what we were facing either. We felt totally isolated and alone - adrift with no help, no understanding and terrified by the thought that Barth Syndrome would inevitably kill our son. BSF changed ALL of that for us and gave us hope, knowledge, comfort and a way to take some control over our son's disorder and his ongoing treatment. BSF has changed us from being isolated victims awating our fates to being warriers in the fight to find a cure and part of a cummunity that cares for itsdelf and makes the world asafer and better place for those affected. Barth syndrome is still a potentially deadly disorder, but so far, BSF has saved my son's life and given us all hope.
A good friend's family has been impacted by Barth's Syndrome for 30 years. At the time their son was diagnosed there was little scientific research, knowledge, or emotional support for families. Since the creation of BSF these problems have been erased at an amazingly quick pace. Now there is research, efficient dissemination of information, and emotional support for families around the globe. I've been impressed with the difference BSF has made in a relatively short amount of time. Now families have hope, both on the medical and emotional fronts.
A very special friend of mine has Barth Syndrome. I have learned so much about this Foundation; from the very beginning to the amazing achievements they have made. The Foundation continues to grow trying to find answers for families. The families connected with the Barth Syndrome Foundation are given encouragement and hope knowing that they are not alone in a difficult journey.
My family has seen how the ideas of a few people became a research and support model that other groups admire and utilize. We feel that every dollar donated brings a cure closer, and that in the meantime, families receive the information and support that sustains them. A dear family friend has Barth Syndrome, and we're so proud of this young man (John W.) for taking a leadership role in the organization. He's an inspiration to everyone that knows him, and the main reason why we donate.
The Barth Syndrome Foundation (BSF) is a dynamic organization that has created a community for families who have a child diagnosed with BTHS, a rare genetic disorder. Because BTHS is so rare, it is important for BFS to be the voice for families in research, education and general awareness, that will one day lead to a better understanding of the disorder and perhaps a cure.
I chose to donate to the Barth Syndrome Foundation after reading one of their newsletters. I felt compelled to give to this incredible organization when I read the stories about these wonderful families. I was actually moved to tears, reading about the challenges and triumphs that these boys and young men experience. I know that my dollar will go far with this small, dedicated group! I look forward to reading the next issue of the newsletter to learn more. Thanks for all that you do to help those affected by this rare disorder.