BARTH SYNDROME FOUNDATION INC

Rating: 4.99 stars   68 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.
2014 Top-Rated Nonprofit
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Community Reviews

Rating: 5 stars  

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".

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

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

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2014

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1 previous review
Rating: 5 stars  

I'm so proud to be a BSF board member. Our organization uses its limited resources very well. Our focus on finding treatments and a cure for Barth Syndrome are always foremost in our minds at the Board level. We dedicate ourselves to the boys with Barth and to their families every step of the way.

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

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

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful? 
1 previous review
Rating: 5 stars  

7 people found this review helpful

As a board member, I've been impressed by how much BSF does with its limited resources and the sense of family and community that BSF fosters. The mission is very clear to everyone - we will never stop working to find a cure for Barth Syndrome. In the meantime, we will provide support for families, educate the medical community about Barth and fund critical research that leads to improved treatments. BSF has only been in existance for less than two decades but it has made a world of difference in the lives of those with Barth and their families.

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

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

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 5 stars  

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.

If I had to make changes to this organization, I would...

Find a way to increase awareness even further so that more boys could be properly diagnosed and therefore have a better chance of survival and a higher quality of life.

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

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

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Rating: 5 stars  

1 person found this review helpful

This is an amazing charity that helps families with a diagnosis of Barth syndrome. There is always someone willing to talk with you about their experiences or just lend and ear. The advancements they have made in research since its inception in amazing. I can't imagine being on this journey without the support of the foundation and all its members.

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1 previous review
Rating: 5 stars  

1 person found this review helpful

BSF is the example to follow when setting up a Foundation. What they have accomplished in 11 years is remarkable. The knowledge and resouces available to families is excellent anf you won't find a tighter knit community than BSF. The willingness of the doctors and scientists who volunteer their time to help families anywhere in the world is amazing!

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

Was this review helpful? 
1 previous review
Rating: 5 stars  

7 people found this review helpful

Without the BSF my son would probably not be as healthy as he currently is. We have learned from experts that we would have never met before the foundation existed. It is the most sharing, giving, insightful, and caring group I have ever belonged to. It has given me hope that my granddaughters, who could be carriers of BTH, will never have to go through what my sons and family have. We are a fighting a disease that is very rare but we will win!

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

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

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 5 stars  

6 people found this review helpful

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!

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

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

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful?