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
Mission: The Barth Syndrome Foundation (BSF) is dedicated to saving lives through education, advances in treatment, and finding a cure for Barth syndrome (BTHS).
Results: Our efforts have provided educational resources to transform families from powerless by-standers to empowered advocates.
Geographic areas served: International
Programs: BSF sponsors a competitive research grant program to facilitate advances in Barth syndrome (BTHS) understanding and to encourage the discovery of new treatments. We are interested in providing “seed grant funding” to young investigators as well as attracting experienced investigators new to the field of BTHS basic science or clinical research. We anticipate that these funds will be used for the testing of initial hypotheses and the collection of preliminary data leading to successful long-term funding by the National Institutes of Health (NIH) and other major granting institutions around the world.
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
BSF is the Little Engine that Could! Barth Syndrome affects a very small number of families but the effects can be devastating. BSF serves affected families, supports clinical caregivers with up to date information for this complicated multi-system disorder and has funded almost $4M in competitively awarded research grants in the last 10 years. They run an incredibly well attended International Science, Medicine and Family Conference every two years, the next is coming up in July of this year. They are an invaluable resource for all three groups and a model organization for such a rare disorder!
As a genetics professional, I can atest to the professionalism of this organization. Not only are they a wonderful source of support to patients and families, they are also responsible for encouraging research and excellent clinical care for families. Very few family support groups ever reach this level of excellence.
I have been working with the Barth Syndrome Foundation for several years. Not only is it inspirational to see the families working together for support and of course, their common goal, but the dedication of the Management and the Board in all facets of running the organization is outstanding. Everyone works together tirelessly to achieve their mission.
