Barth Syndrome Foundation Inc

Rating: 4.99 stars   78 reviews

Issues: Health, Philanthropy

Location: PO Box 618 Larchmont NY 10538 USA

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.
2015 Top-Rated Nonprofit
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Community Reviews

Role: Professional with expertise in this field
Rating: 5 stars  

2 people found this review helpful

The Barth Syndrome Foundation is the single most important organization for patients and their families with this devastating disease, and critically, also for the doctors and researchers who are investigating this disease. The BSF is incredibly committed and well-run.

 
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1 previous review
Rating: 5 stars  

3 people found this review helpful

As a physician-scientist working in the field, I cannot say enough good things about the Barth Syndrome Foundation. Like many worthy non-profit organizations, they focus on a rare but devastating disease. Like many non-profits, they raise money for research and heighten awareness. Like many other non-profits, they are a tight-knit community. What I think sets the BSF apart is the biennial International Scientific, Medical, and Family Conference, which brings together not only scientists, doctors, and other healthcare professionals, but families and patients too. The conference then takes on a personal quality. The science and medicine of the disease we're discussing are intertwined with the personal side, at this truly inspiring conference.
The BSF website is also exemplary.

How does this organization compare with others in the same sector?

Very Well

How much of an impact do you think this organization has?

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2014

 
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Role: Professional with expertise in this field
Rating: 5 stars  

4 people found this review helpful

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!

How does this organization compare with others in the same sector?

Very Well

How much of an impact do you think this organization has?

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2012

 
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