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

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Reviews for Barth Syndrome Foundation Inc

Role: General Member of the Public
Rating: 5 stars  

My son was diagnosed with Barth syndrome in February of 2016. Barth Syndrome Foundation provided invaluable information to help navigate the struggles associated with this rare genetic disorder. We've met several families through BSF that share my son's diagnosis and have been able to learn even more. Barth Syndrome Foundation truly is, a great nonprofit...

 
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Rating: 5 stars  

Being the parent of a child with a rare disease of less than 200 known affected males makes for a very isolating and lonely scenario... Being told by countless doctors that they have never heard of the condition, even more so.
But thanks to Barth Syndrome Foundation, they close that gap.
They provide endless information and support. They connect the families which are scattered over the world.
The information provided to families and physicians by BSF is invaluable and at times lifesaving. And now, thanks to BSF, we are even on the verge of a possible breakthrough treatment! I cannot say enough about BSF, my extended family. In a world where my son is extraordinary, this is the one place to come where he can feel ordinary.

 
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1 previous review
Rating: 5 stars  

We will always be so grateful for Barth Syndrome Foundation.
More than seven years ago, our journey began in a way that the majority of this world will be lucky enough to never experience.
The future was bleak and we felt very alone.
Our newborn was in heart failure and given a very poor prognosis. He was placed under hospice care at 45 days old until the age of 15 months when he overcame.
Along the way, Christopher has defeated many odds and obstacles, including hospice, a stroke and a current medicine regimen of thirty two doses a day and two injections a week.
Throughout it all, he remains positive and happy. Our faith has carried us through many dark times.
And Because of Barth Syndrome Foundation, we have been given HOPE, a support system and life saving information.
We no longer feel so alone being able to interact with other families with similar daily challenges.
Our BSF family is the best part of this horrific diagnosis.
We are blessed to be given HOPE through seeing the older boys and men grow stronger and be productive members of society and even start families of their own!
Together, the efforts of Barth Syndrome Foundation, the supporters and scientists who are tirelessly dedicated to our guys, we have tangible HOPE of several possible treatments for which there are currently none.
We have HOPE for a cure someday.
Because of Barth Syndrome Foundation, a once 100% fatal diagnosis now before the age if three has HOPE for a prolonged survival rate.
We feel that Barth Syndrome Foundation has played a role in the survival of our own son.
But there's still so much to be done.
We are still suffering the loss of some incredibly precious men and boys.
We have HOPE for a future in which Barth Syndrome never cause suffering or loss of life again.
We have HOPE that each boy will receive a diagnosis that will undoubtedly help their chances of survival and quality of life.
We HOPE that you will join us this giving Tuesday, December 1, 2015 in supporting Barth Syndrome Foundation. What will YOU give?
www.barthsyndrome.org

 
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Review from #MyGivingStory
1 previous review
Rating: 5 stars  

6 people found this review helpful




We are so glad that we found BSF! We were warmly welcomed into what is commonly referred to as a family. I see why the BSF is described as such and is composed of families, physicians, scientists, donors and volunteers around the world.. This overwhelming, mind boggling disease has a group of warm, caring, compassionate and INFORMED people. It is such a reassuring feeling to know there are others who have been exactly where we have been.

We all have such a unique story, yet they are all very similar. If someone is newly diagnosed with Barth syndrome, contacting BSF is a MUST! There you can find lifesaving information and support beyond expectations

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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Role: General Member of the Public
Rating: 5 stars  

1 person found this review helpful

My brother,Bob was diagnosed with Barth Sydrome about 12 years ago.i reached out to Shelley Bowen,and she immediately returned my call.I don't remember everything but i did learn more about barth syndrome. My grandson was born in September 2008 and was diagnosed with Barth Sydrome in January of 2009.My grandson got the gift of life by having a heart transplant at the ageof 11 months.. We were told without a heart transplant byhis 1st Birthday, he may not live much past that. This was my witnees of a miracle, and I thank this organization for saving lives. Mary Klein

 
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Role: General Member of the Public
Rating: 5 stars  

3 people found this review helpful

Amazing source of support, information and knowledge! BSF is always striving for the good of everyone and for that I can only thank them! It is amazing to see how BSF has helped and changed so many of our lives in a positive way. While it is always wonderful to look to the future I also think it is wonderful to look back and see how truly amazing this organisation has came in such a short time and that is testament to the beautiful souls who work tirelessly for the good of everyone....thank you from the bottom of my heart!!

 
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1 previous review
Rating: 5 stars  

4 people found this review helpful

Wonderful organisation which supports not only my son but our whole family. We have attended 2 conferences and have found the Barth community to be a very open, warm and loving group of people. The listserve is truly a lifeline and offers a wealth of information, shared experience, advice and more importantly a listening ear from others who "just get it". Thank you BSF for everything you have done, everything you do and everything that you are!

Will you volunteer or donate to this organization?

Definitely

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

Life-changing

When was your last experience with this nonprofit?

2013

 
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Role: General Member of the Public
Rating: 5 stars  

4 people found this review helpful

BSF was a lifeline to our family, we were no longer alone in this new chapter in our lives. I am not quite sure that such an organisation has came such a long way in such a short time ever before and that is testament to the strength of the people who are so passionate about helping all of the boys and young men affected by Barth Syndrome. We will always be grateful from the bottom of our hearts to each and every person that we have met along the way, thank you!

Will you volunteer or donate to this organization?

Definitely

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

Life-changing

When was your last experience with this nonprofit?

2012

 
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Role: General Member of the Public
Rating: 5 stars  

6 people found this review helpful

I´m Miguel´s father. Miguel was( he ascended to the heaven) 5 years old; he was 4 when we diagnosed BS. From this moment we knows what´s can happened with BS thanks to your´s web. For us BSF was THE HOPE. We were not alone.

Will you volunteer or donate to this organization?

Likely

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

A lot

When was your last experience with this nonprofit?

2012

 
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Rating: 5 stars  

7 people found this review helpful

I have been involved with the Barth Syndrome Foundation since its first being in 2000 in Baltimore I IWith BSF we found another family, our BARTH FAMILY. With BSF i'm not lose, I found hope and help. I have had two sons with Barth syndrome (one whom did not have the opportunity of being diagnosed and passed away in 1991. My second son, Pedro, now 19, is doing well, Portugal

Will you volunteer or donate to this organization?

Definitely

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

Life-changing

When was your last experience with this nonprofit?

2012

 
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Role: General Member of the Public
Rating: 5 stars  

6 people found this review helpful

I have been involved with the Barth Syndrome Foundation since its first being in 2000 in Baltimore, MD. I immediately made a connection with the families that I met during this meeting. At first I volunteered doing whatever it was I could do to help raise awareness and funds. I then was invited to join the Board where I served for one term. I now am an employee of the Foundation, and truly believe that I have found my calling. I have had two sons with Barth syndrome (one whom did not have the opportunity of being diagnosed and passed away in 1989. My third son, Derek, now 19, is doing well, and followed at Boston Childrens. I have found a family around the world who TRULY UNDERSTANDS what it means to have a child with this disease.

Will you volunteer or donate to this organization?

Definitely

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

Life-changing

When was your last experience with this nonprofit?

2012

 
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