Over 1.8 million nonprofits and charities for donors, volunteers and funders

Claim This Nonprofit

More Info

Add to Favorites

Share this Nonprofit

Donate

Nonprofit Overview

Causes: Birth Defects & Genetic Diseases Research, Health, Heart & Circulatory System Diseases & Disorders Research, Pediatrics, Philanthropy, Philanthropy, Voluntarism & Grantmaking Foundations

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.

Community Stories

9 Stories from Volunteers, Donors & Supporters

7 Florence6

Client Served

Rating: 5

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

Susan Hone

Board Member

Rating: 5

I would be totally lost without the advice, support and knowledge of this group. In the 16 years since it was decided to establish the foundation we are already heading into clinical trials to treat this horrible syndrome. Thank you to everyone involved

Previous Stories

Volunteer

Rating: 5

I do not know where I would be without the foundation. They have helped me numerous times with advice about my son that has made a difference in his care. The foundation is actively looking for a treatment or cure for Barth syndrome and I am confident they will find one.

Read more

Board Member

Rating: 5

I've been involved with BSF for about 10 years now and I can't speak highly enough of this great organization. For a small group focused on a rare genetic condition, it's amazing to see the impact they have. The Foundation has raised millions of dollars for research into Barth syndrome, has raised awareness among the medical community and is always there for parents in need.

Previous Stories
2

Board Member

Rating: 5

My experience as a board member for Barth Syndrome Foundation has been exceptional. The family services the organization provides and the quality of the research it funds are phenomenal for a rare genetic condition. I just returned from our international conference, which brought together affected individuals, researchers, doctors and other medical professionals, and friends and family members. It's a uniquely enriching experience for everyone who is part of our Barth "family".

Read more
3

Board Member

Rating: 5

BSF creates a community for families that previously felt terribly alone with this rare disease. On top of that, with the active participation of some of the best physicians and researchers around the world, we have made discoveries for treatment and, we believe, eventually a cure that exceed even our own very high expectations of ourselves. The rigor of our research grant process has made this possible, along with our commitment to never give up.

2

Board Member

Rating: 5

The Barth Syndrome Foundation (BSF) is the only organization in the world focussed on this rare genetic disorder that affects mostly boys. This organization really serves as the center for information and activity on this life-threatening, complex disease. It has a world-class Scientific and Medical Advisory Board, offers research grants, organizes and sponsors top-notch international conferences every two years (with separate tracks for scientists and doctors and for families), provides important information and a supportive community for affected individuals and families, and offers a website and other materials for anyone who wants to learn more about this complicated, metabolic disease. Though a small organization, BSF is well-regarded among rare disease groups, since it is has been able to accomplish a great deal and continues to work diligently to do more. I know that it has made a difference to our family and to our son who has Barth syndrome. Not only is he no longer alone, but I believe that the scientific and medical advances that have been made with BSF's help have saved his life.

7

Board Member

Rating: 5

I'm a Board Member, but also have a son with Barth syndrome. For many years we knew no one else who was affected with Barth syndrome. My family and I were completely alone. Now, we have families from all over the world in the Barth syndrome community. There really are no words to describe the impact BSF has had on our lives--in many ways. We now have an extended family who understand completely what it's like to live with a such a rare, serious and potentially life-threatening disorder. BSF is small, but proactive, and we never give up--we are working hard to find answers about this disorder by funding research, as well as providing family services, raising awareness, holding an amazing conference every two years that combines families, reserachers, and physicians, and more. We are very grateful to have BSF in our lives!