Barth Syndrome Foundation Inc

Rating: 4.99 stars   95 reviews

Address:

2005 Palmer Avenue #1033 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.

2016 Top-Rated Nonprofit
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More Info

855-662-2784
https://www.barthsyndrome.org

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Reviews for Barth Syndrome Foundation Inc

Rating: 5 stars  

3 people found this review helpful

Amazing association, extremely active in fund raising, in raising awarness on a rare disease, on supporting affected families and promoting medical research

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?

2014

 
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1 previous review
Rating: 5 stars   Featured Review

7 people found this review helpful

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

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?

2012

 
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Rating: 5 stars  

Connecting with the Barth Syndrome Foundation changed our lives.

We are parents of two boys. Max (now 7) and Brady (now 6). Before joining the BSF community, we had noticed that Max had low muscle tone and after a few years of research finally got a Barth diagnosis for him. Brady on the other hand, showed none of the symptoms.

Once the diagnosis achieved, we still had little input as to what to do to help Max. We saw many doctors, all very nice and keen to help. But at the end of the day, a lot of the work went towards monitoring, and little of it towards helping/improving.

After connecting with BFS, we felt like we had finally met 'our people'! Parents sharing stories and observations. Doctors providing recommendations that we could pass along to Max's doctors. Friends caring for each others.

We now finally feel that we can help our Max. He is a wonderful 7 year old, full of curiosity and wit. It's a great feeling and we are convinced that through the persistence of BSF and the network with our doctors, a cure will be found.

 
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Rating: 5 stars  

I am 100% certain my son would not be where he is today without the Barth Syndrome Foundation. They have a listserve for parents of affected boys to communicate globally about nuances of the disease. They have two DNA registries which are helping researchers work towards a cure. They have a bi-annual conference that is both for families and scientists to meet and share information/data about the disease. They support and recognize all the members who do fundraisers to help find a cure for our boys. It is truly a world class foundation and I am so proud to be a part of it.

 
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1 previous review
Rating: 5 stars  

2 people found this review helpful

My son has Barth Syndrome and the Barth Syndrome has not only saved his life through proper diagnosis of his disease but they continue to fight for a cure with cutting edge research. Heart on a chip using Barth Syndrome boys own IPS cells and replacement enzyme therapies are being studied to hopefully find a cure someday. The boys, families, doctors and scientists are all truly amazing! Parents of these boys raise alot of the money for the foundation by breaking boards in karate, fencing, grass volleyball, bowling, poker, bingo, jewelry sales, Iron-man races among many others.

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?

2014

 
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1 previous review
Rating: 5 stars  

5 people found this review helpful

Thanks to the Barth Syndrome Foundation's website for making us aware of our son's condition before the Doctors even diagnosed him! I truely believe BSF helped save my son's life! Here is our story: My son was in the hospital for 2 weeks at 3 months of age with failure to thrive and he had stopped eating by mouth. He had a NG tube put in and medications giving after finding out he was in heart failure. The subject of a heart transplant was brought up but his heart responded to the medication. Through blood tests we also found he was neutropenic so putting all the pieces together we searched the internet every chance we could and came upon a number of diseases. We narrowed it down to Barth Syndrome and then asked for the specific DNA test to confirm it. We were denied the test because the urine test was not conclusive for Barth Syndrome. The Barth Syndrome Foundation let us know the urine test is not always a good indicator so we kept fighting for a DNA test and finally received one. Later we received a letter which was an official apology from the genetics doctor at the hospital who had initially refused the DNA test to us. The Barth Syndrome Foundation to this day stands with us, educates us, comforts us and prepares us for the road ahead. At their bi-annual conference in Florida, which we have attended two so far, we have met so many other boys affected by this dreadful disease and that has brought us the most hope of all!

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?

2012

 
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Rating: 5 stars  

The people with the foundation go far beyond what is asked. Not only do they do their jobs, they become family. They love & care about each one of the families affected by this disease.
Cannot thank them enough!!!

 
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Rating: 5 stars  

From the moment our son was diagnosed with Barth Syndrome, BSF has been there for us. With every step of the way on this journey,we know we can lean on BSF for expertise, support and understanding. Someone once said to me that living with a child with Barth Syndrome is like living in a constant state of terror, waiting for something to happen every day. Barth Syndrome foundation makes this live easier to face every day. BSF gives us hope and tools to deal with it. You will never find a group of more dedicated parents and professionals.

 
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Rating: 5 stars  

The Barth Syndrome Foundation has made such a difference to our lives. I feel we owe the health of our son to their hard work and determination. They offer so much help and support and for a rare disease with only approximately 200 boys affected world wide they have incredibly got to the stage of starting clinical trials in the very near future. They are amazing.

 
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1 previous review
Rating: 5 stars  

3 people found this review helpful

The Barth Syndrome a Foundation provides wonderful
Support and immeasurable hope. It gives families from all over
the world a place to connect with each other and share the happiness and sadness
that comes with this often fatal and very rare disorder. The conference
put together biannually by BSF is one if the most incredible
experiences a boy with Barth and his family can have. For a non-profit that supports
a syndrome that is so very rare it is very mighty and in a short space of time
it has funded research so we now have hope that our boys will grow to be
Men.

 
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1 previous review
Rating: 5 stars  

8 people found this review helpful

With out BSF I would be isolated and lost. My eldest son was born with Barth Syndrome and the doctors knew so very little about it. The foundation has enabled us to reach out and speak with people who just understand. It is such a comfort to know that somebody else just "gets it". It is also wonderful to know that there are so many wonderful people who at the click of a button will be there to share their knowledge and lend their support. I will never forget the first conference we attended when my son saw other Barth Boys for the first time and tall ones at that! It was like all of his Christmas's had come at once. The change in him was amazing. A small group of people have made a very big impact and I am so very grateful to them.

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?

Quite well

When was your last experience with this nonprofit?

2012

 
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Rating: 5 stars  

When our grandson passed away at age 6 months from what was later diagnosed as Barth Syndrome we were desperate for information about this extremely rare disease. Finding the Barth Syndrome Foundation (BSF) has been a Godsend. Not only were we personally contacted, but also invited to gatherings where we could speak with other families of boys suffering with Barth's. We now have a second grandson living with Barth Syndrome but because of the tireless efforts of the BSF to disseminate the latest information on treatments and to connect him with doctors and specialists worldwide, there is hope that he may grow up and live a productive life.
In spite of the fact that Barth Syndrome is so very rare the BSF has created opportunities to get to know and share experiences with other Barth boys, men and their families, and with researchers and specialists searching for a cure. The Biannual conference arranged by the BSF ensures that this happens and that as many families as possible may attend.
Barth Syndrome Foundation. Truly amazing. Truly family.

 
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Rating: 5 stars  

1 person found this review helpful

The Barth Syndrome Foundation has been a great support for our family since my grandson Jacob was diagnosed in 1998 at the age of 4 months. He had a heart transplant at the age of two and was on life support for 11 weeks. We had support from the Barth community. He had a second Transplant at the age of 16 and again we had the support of the community of
families going through some of the same things we did. It is a very worthy nonprofit.

 
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1 previous review
Rating: 4 stars  

5 people found this review helpful

BSF is a great organization and these wonderful boys and their families deseve to have the support it offers. I am grateful for this organization and the support our family has received. My granson was diagnosed at four months and had a heart transplant at age two. We have received so much encouragement and support we could not get any place else. We have some tough days ahead and I know the encouragement we will receive will be appreciated and will help us get through.

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?

2012

 
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Rating: 5 stars  

1 person found this review helpful

BSF is truly an amazing organization. They are a lifeline to families and individuals affected by Bart Syndrome. The wealth of knowledge and information, compassion and understanding, friendship and hope, that comes from being a part of an active, professional and caring foundation is beyond words. Barth Syndrome Foundation is simply phenomenal.

 
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1 previous review
Rating: 5 stars  

4 people found this review helpful

When our son was diagnosed with Barth Syndrome, we were terrified. BSF not only helped us through some of the toughest times in our lives, it also showed us hope and support beyond anything imaginable. If you are one of the few affected families around the world with this rare disease, you feel alone and misunderstood by everyone. In most cases, not even the Drs that are working on saving your child's life know anything about Barth Syndrome. The info and expert advice, coupled with medical and scientific advisory board and all the researchers working on the cure are INVALUABLE!!! You will never meet another group of people as dedicated and unwavering as BSF!

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?

2012

 
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Rating: 5 stars  

1 person found this review helpful

This an absolute wonderful organization. There is so much love, understanding, and information. Every single person will do everything they can to help each other. It is a tight community with friendships that will last a life time.

 
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1 previous review
Rating: 5 stars  

3 people found this review helpful

This organization has changed our lives. When my 15 year old son was diagnosed with Barth syndrome, we were overwhelmed and lost. Through finding the Barth Syndrome Foundation, we were able to find specialists and information as to how to treat this extremely rare illness. Within just one week my son was starting to feel better. It has helped our whole family understand the illness and to know that we are not alone. The physical and mental support is just priceless.

 
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