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Barth Syndrome Foundation Inc

Rating: 4.99 stars   83 reviews 2,003

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.

2015 Top-Rated Nonprofit
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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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Role: General Member of the Public
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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Rating: 5 stars  

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.

 
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1 previous review
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 number of physicians and scientists who volunteer their time to come to our conference and explain the research they are doing to find a cure and help those affected by Barth syndrome is amazing. I can't imagine how different our lives would be without this foundation, they have saved my son and given me hope for his future.

 
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1 previous review
Rating: 5 stars  

4 people 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  

4 people 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

 
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1 previous review
Rating: 5 stars  

10 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

 
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Rating: 5 stars  

1 person found this review helpful

BSF is the Little Engine that Could! Barth Syndrome affects a very small number of families but the effects can be devastating. BSF serves affected families, supports clinical caregivers with up to date information for this complicated multi-system disorder and has funded almost $4M in competitively awarded research grants in the last 10 years. They run an incredibly well attended International Science, Medicine and Family Conference every two years, the next is coming up in July of this year. They are an invaluable resource for all three groups and a model organization for such a rare disorder!

 
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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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Role: Professional with expertise in this field
Rating: 5 stars  

1 person found this review helpful

The Barth Syndrome Foundation is an incredible organization whose professional members - scientists, physicians, psychologists, nutritionists, physical therapists and others - freely interact with patients and their families, all focused on finding effective treatments for this rare disease. Though small, the Foundation manages to fund research (several projects every year!), host an biennial scientific and family conference that draws an international audience, and provide a vast support network for patients and families. The connectedness felt among all in the Foundation - from the sickest infants to the young men who have survived all challenges, to their parents and families, to those working towards a cure - is unlike anything I've witnessed in any other professional organization.

 
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1 previous review
Rating: 5 stars  

3 people found this review helpful

The Barth Syndrome Foundation is the single most important organization for patients and their families with this devastating disease, and critically, also for the doctors and researchers who are investigating this disease. The BSF is incredibly committed and well-run.

 
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1 previous review
Rating: 5 stars  

4 people found this review helpful

As a physician-scientist working in the field, I cannot say enough good things about the Barth Syndrome Foundation. Like many worthy non-profit organizations, they focus on a rare but devastating disease. Like many non-profits, they raise money for research and heighten awareness. Like many other non-profits, they are a tight-knit community. What I think sets the BSF apart is the biennial International Scientific, Medical, and Family Conference, which brings together not only scientists, doctors, and other healthcare professionals, but families and patients too. The conference then takes on a personal quality. The science and medicine of the disease we're discussing are intertwined with the personal side, at this truly inspiring conference.
The BSF website is also exemplary.

How does this organization compare with others in the same sector?

Very Well

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

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2014

 
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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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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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Rating: 5 stars  

1 person found this review helpful

BSF, an amazing organization: its excellent website and newsletter give us information about the medical and daily aspects of the disease and also about the progress of the research financed by the Foundation. Bringing people together via the Listserv or the conferences and allowing them to share their experiences and to get help and advice is also quite appreciated. Our Thanks to the dedicated team that makes BSF so invaluable for all affected individuals and their families.

 
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1 previous review
Rating: 5 stars  

2 people found this review helpful

BSF has made such a huge difference in our life when our grand-son was diagnosed with Barth Syndrome when he was 3 months old. We were overwhelmed with questions nobody could answer and we found in BSF a wonderful community of parents and experts offering knowledge, advice and support. The Internet Site is a remarkable source of information for many aspects of the disease and for every day life issues, the Listserv also provides quick and useful information through shared experiences. BSF is an excellent foundation which gives hope for a better future for the children and adults affected.

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

it is perfect

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

 
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