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
The community is tight-knit, knowledgeable, and inclusive. The Foundation includes not only the patients and their families but also scientists, physicians, and others taking care of Barth patients, all working together - and I mean really together - to cure Barth Syndrome. I believe the single "jewel" that epitomizes this Foundation is the biennial international conference they organize, which brings together patients, their families, and scientists from around the world to make headway into this devastating disease.
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The Barth Syndrome Foundation is an incredible organization whose professional members - scientists, physicians, psychologists, nutritionists, physical therapists and others - freely interact with patients and their families, all focused on finding effective treatments for this rare disease. Though small, the Foundation manages to fund research (several projects every year!), host an biennial scientific and family conference that draws an international audience, and provide a vast support network for patients and families. The connectedness felt among all in the Foundation - from the sickest infants to the young men who have survived all challenges, to their parents and families, to those working towards a cure - is unlike anything I've witnessed in any other professional organization.
Barth Syndrome Foundation's commitment to advance an awareness and science behind this enigmatic killer makes BSF truly the Best nonprofit organization.
I became involved with the Barth Syndrome Foundation when I attended their first meeting in 2000. What a long way they have come in just 12 years! They provide substantial support for research aimed at understanding the condition, they provide amazing support to the affected and their families, they host biennial Family and Scientific conferences, there is a web site full of information, a listserv for families and another one for doctors and scientists, there are volunteer experts that can be consulted, families can exchange experiences and advice regarding this variable disease -- and there is the welcoming warmth, the belonging to a superfamily, the link across oceans and continents. In short, BSF is wonderful!
