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68 Reviews
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July 31, 2014

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1 previous review
November 15, 2012

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 w... more

July 31, 2014

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

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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

November 15, 2012
4 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

More feedback...

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

October 19, 2014
1 person found this review helpful

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October 19, 2014
1 person found this review helpful

When I found out my son had Bath Syndrome it was overwhelming in every way. BSF have been a TOTALLY INVALUABLE resource in so many ways. Clear information for me as a parent, for medical professionals, help with planning school placements and a mine if useful information I didn't even know I would need ! Alongside this the opportunity to hear from other parents, give and receive support and understanding from someone who knows what it like. Via the list serve and also at our local clinic and family fun days. Thank you BSF YOU ARE AWESOME
September 23, 2014

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1 previous review
May 21, 2013

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 li... more

September 23, 2014

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!!
May 21, 2013
1 person 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!

More feedback...

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

September 20, 2014

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1 previous review
November 9, 2012

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 w... more

September 20, 2014

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.
November 9, 2012
5 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.

More feedback...

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

September 20, 2014
1 person found this review helpful

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2 previous reviews - show all
June 17, 2013

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 t... more

September 20, 2014
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.
June 17, 2013
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!

More feedback...

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

November 10, 2012
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!

More feedback...

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

September 18, 2014

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September 18, 2014

BSF is an amazing foundation. They are an invaluable resource to those of us with families affected by Barth syndrome.
September 18, 2014
1 person found this review helpful

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September 18, 2014
1 person 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.
September 18, 2014
1 person found this review helpful

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September 18, 2014
1 person found this review helpful

Our son has been living with Barth Syndrome for 21 years. Since the very beginning, when 3 mothers found each other on the Internet, this Foundation has been second to none. To this day, it is, without question, a great source of information, guidance, education & support. In fact, there are two women specifically, Shelley Bowen & Lynda Sedefian, who deserve a loud, long, "Standing ovation"...
July 31, 2014
1 person found this review helpful

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July 31, 2014
1 person 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.

More feedback...

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

July 31, 2014

more


2 previous reviews - show all
September 5, 2013

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 Bo... more

July 31, 2014

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".

More feedback...

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

September 5, 2013

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.

More feedback...

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

November 12, 2012
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.

More feedback...

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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