BARTH SYNDROME FOUNDATION INC

Rating: 4.99 stars   68 reviews

Issues:

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.
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Community Reviews

Rating: 5 stars  

3 people found this review helpful

Our son is one of the older people surviving with Barth syndrome in the world. Until BSF was created literally no one knew about this disorder including the Docters treating my son, and of course our friends and family had no idea what we were facing either. We felt totally isolated and alone - adrift with no help, no understanding and terrified by the thought that Barth Syndrome would inevitably kill our son. BSF changed ALL of that for us and gave us hope, knowledge, comfort and a way to take some control over our son's disorder and his ongoing treatment. BSF has changed us from being isolated victims awating our fates to being warriers in the fight to find a cure and part of a cummunity that cares for itsdelf and makes the world asafer and better place for those affected. Barth syndrome is still a potentially deadly disorder, but so far, BSF has saved my son's life and given us all hope.

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2012

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Rating: 5 stars  

7 people found this review helpful

A good friend's family has been impacted by Barth's Syndrome for 30 years. At the time their son was diagnosed there was little scientific research, knowledge, or emotional support for families. Since the creation of BSF these problems have been erased at an amazingly quick pace. Now there is research, efficient dissemination of information, and emotional support for families around the globe. I've been impressed with the difference BSF has made in a relatively short amount of time. Now families have hope, both on the medical and emotional fronts.

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Rating: 5 stars  

7 people found this review helpful

A very special friend of mine has Barth Syndrome. I have learned so much about this Foundation; from the very beginning to the amazing achievements they have made. The Foundation continues to grow trying to find answers for families. The families connected with the Barth Syndrome Foundation are given encouragement and hope knowing that they are not alone in a difficult journey.

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Rating: 5 stars  

5 people found this review helpful

My family has seen how the ideas of a few people became a research and support model that other groups admire and utilize. We feel that every dollar donated brings a cure closer, and that in the meantime, families receive the information and support that sustains them. A dear family friend has Barth Syndrome, and we're so proud of this young man (John W.) for taking a leadership role in the organization. He's an inspiration to everyone that knows him, and the main reason why we donate.

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2011

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Rating: 5 stars  

6 people found this review helpful

The Barth Syndrome Foundation (BSF) is a dynamic organization that has created a community for families who have a child diagnosed with BTHS, a rare genetic disorder. Because BTHS is so rare, it is important for BFS to be the voice for families in research, education and general awareness, that will one day lead to a better understanding of the disorder and perhaps a cure.

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When was your last experience with this nonprofit?

2012

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Rating: 5 stars  

6 people found this review helpful

I chose to donate to the Barth Syndrome Foundation after reading one of their newsletters. I felt compelled to give to this incredible organization when I read the stories about these wonderful families. I was actually moved to tears, reading about the challenges and triumphs that these boys and young men experience. I know that my dollar will go far with this small, dedicated group! I look forward to reading the next issue of the newsletter to learn more. Thanks for all that you do to help those affected by this rare disorder.

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2011

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