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61 Reviews
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September 6, 2013

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September 6, 2013

The Barth Syndrome Foundation (BSF) is the only organization in the world focussed on this rare genetic disorder that affects mostly boys. This organization really serves as the center for information and activity on this life-threatening, complex disease. It has a world-class Scientific and Medical Advisory Board, offers research grants, organizes and sponsors top-notch international conferences every two years (with separate tracks for scientists and doctors and for families), provides important information and a supportive community for affected individuals and families, and offers a website and other materials for anyone who wants to learn more about this complicated, metabolic disease. Though a small organization, BSF is well-regarded among rare disease groups, since it is has been able to accomplish a great deal and continues to work diligently to do more. I know that it has made a difference to our family and to our son who has Barth syndrome. Not only is he no longer alone, but I believe that the scientific and medical advances that have been made with BSF's help have saved his life.

Ways to make it better...

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

Find a way to increase awareness even further so that more boys could be properly diagnosed and therefore have a better chance of survival and a higher quality of life.

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

September 5, 2013

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September 5, 2013

I have been involved in a number of volunteer organizations and have to say the BSF group is quite outstanding. Started from a small set of dedicated volunteers, this group went from being concerned parents to a highly professional organization that is driving research and results for the affected population around the world. Everyone involved cares deeply about the families and the affected boys and men, and it shows in everything they do. As a parent, I know I always have the backing of the organization and if my affected son ever gets into trouble, he will be able to get help from the world's experts on this condition. As a donor I know my funds are well spent and leveraged for maximal effect. As a volunteer I know every hour I can spend makes a difference. I have learned and grown with this organization, both as a volunteer and as a family member of an affected individual. I can't thank them enough.

Ways to make it better...

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

Find a way to get the members together more often, especially the affected individuals.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

September 5, 2013

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September 5, 2013

When our son was diagnosed with Barth Syndrome in 2006, we felt lost and alone. With having a rare genetic disease that affects less than 200 males worldwide, it's hard for others to relate. Not even most close family and friends can truly relate. We decided to reach out to the Barth Syndrome Foundation, thinking that our son could help other boys like him by relating medical information. By reaching out, we found a WHOLE LOT more than just a place to share invaluable medical information. We found others who knew exactly what we were going through. Someone else finally understood our fears, hopes, struggles, and simple joys. We could share laughs, tears, and achievements with people who 'got' us. This group is full of knowledge and wisdom about things that no other group could share in the same way. This foundation is AWESOME!

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

June 17, 2013
1 person found this review helpful

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1 previous review
November 10, 2012

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, i... more

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

May 21, 2013
1 person found this review helpful

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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

May 18, 2013
1 person found this review helpful

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May 18, 2013
1 person found this review helpful

Our son is affected by this disease and when he was diagnosed over 10 years ago, the Barth Syndrome Foundation dramatically changed his path of treatment and has been a life line for us. The medical advisory staff is incredible! The people involved and the families affected are extraordinary! The foundation provides instant access of help from other families as well as experts in the disease and can truly save lives by just one phone call, text, or email!

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 19, 2012
3 people found this review helpful

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November 19, 2012
3 people found this review helpful

I first got in contact with the Barth Syndrome Foundation when my youngest son was born in May 2011. The support we received from the BSF was instantly overwhelming, and we felt blessed in knowing we were not on this terrifying journey alone. We live in Australia, and even though the BSF is based in USA, we felt confident that our questions and concerns in those early days could be addressed at any time of need. I truly appreciate and admire the BSF, and support its values and principles in helping families worldwide in the education about Barth Syndrome and it's complexities.

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

November 15, 2012
3 people found this review helpful

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November 15, 2012
3 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.

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

November 15, 2012
4 people found this review helpful

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November 15, 2012
4 people found this review helpful

I became involved with the Barth Syndrome Foundation when I attended their first meeting in 2000. What a long way they have come in just 12 years! They provide substantial support for research aimed at understanding the condition, they provide amazing support to the affected and their families, they host biennial Family and Scientific conferences, there is a web site full of information, a listserv for families and another one for doctors and scientists, there are volunteer experts that can be consulted, families can exchange experiences and advice regarding this variable disease -- and there is the welcoming warmth, the belonging to a superfamily, the link across oceans and continents. In short, BSF is wonderful!

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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?

2012

November 15, 2012
4 people found this review helpful

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November 15, 2012
4 people found this review helpful

Those who have been touched in any way by this rare (but way underdiagnosed) disease understand how inportant this work and our support are.

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Would you volunteer for this group again?

Unsure

For the time you spent, how much of an impact did you feel your work or activity had?

Some

Did the organization use your time wisely?

Quite well

Would you recommend this group to a friend?

Likely

When was your last experience with this nonprofit?

2012

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