My Nonprofit Reviews

I've been involved with the BSF since its inception, 20 years ago. I've been a researcher and still am a volunteer -- I would no longer be involved if they were not first rate: in fact, they have exceeded all expectations in such a short time. This is because of a clearly defined sense of mission of the leaders. There is a mission of achieving therapies and perhaps even a cure, done purposely and scientifically, no shortcuts, no snake oil. In addition, there have been excellent additions to BSF's offerings in the form of Family Services and support. Families with Barth syndrome children find hope and love.

When BSF was founded in 2000, when so little was known or understood about Barth Syndrome, I never expected that it would lead to so much progress: in less than 20 years, BSF has brought together a large number of researchers that collaborate; lifespan has increased dramatically with better understanding of the disease mechanisms; BSF-funded research has led to 2 clinical trials seeking to alleviate the disease; BSF offers excellent educational materials for families; BSF offers tremendous support to affected families thru their Family Services section. The future looks very hopeful.

I am a scientist who has worked on Barth syndrome research since 2000 when BSF was started and it is amazing what they have accomplished since then. The biennial Conference brings together families, scientists and clinicians creating an opportunity for studies of the syndrome, opportunities for the families to meet and exchange experiences, opportunities for scientific collaborations. In between, one needs only to look at the BSF website to see all the services they offer to families and clinicians. All this effort is culminating in some currently ongoing clinical trials of therapies. I am headed to the 2018 Conference with great anticipation