My Nonprofit Reviews

When my youngest brother was just a baby, he was life-threateningly ill and nobody was really sure why or what he had. It was years before we got an actual diagnosis of Barth Syndrome, and without a diagnosis it was both scary and lonely. When we found the Barth Syndrome Foundation, it provided a special kind of hope, and an incredibly invaluable support network for people who thought their family was alone in the world with their child's illness. Bringing the families affected by this extremely rare disease together to pool resources and experience has helped both families and their doctors know better what to try, what has already been tried, what warning signs to look for, and has given hope for finding a cure. Their research has been invaluable, and the work done at educating physicians and providing them with up-to-date information on the research helps families all over the world access better treatment and more hope of survival than they might otherwise have. My brother is doing very well considering the severity of his illness, and, most importantly of all, I still have him with me - and the value of that gift is immeasurable.

More Feedback