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54 Reviews
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November 15, 2012
4 people found this review helpful

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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

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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?

2012

September 9, 2013

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September 9, 2013

Life before BSF can be characterized by one word, isolation. Isolation from informed doctors and researchers, from necessary services, from other affected boys and families, and from support of any nature.
Life since BSF can be characterized by one word, teamwork. Teamwork amongst doctors and
researchers, services providers, affected boys and their families, and support from all involved!
BSF is HOPE, for a treatment, a cure, for a better life for all our boys/young men!

Ways to make it better...

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

Include discussion and possibilities for the participation of, and services for the young adult population of BSF.

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 6, 2013

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September 6, 2013

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.

Ways to make it better...

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

it is perfect

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

September 6, 2013

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September 6, 2013

There is not a doubt in my mind that my son is doing so well today because of the work of the Barth Syndrome Foundation (BSF). Having 2 children born with Barth syndrome, I know all too well the effects of this devastating disorder. After losing my first son at 2 weeks of age to an undetected heart condition, I was told it was likely a fluke and to try for another baby. Imagine the surprise and absolute horror I felt when my second son was born with the same heart problem. Thankfully it was detected, and my second son underwent successful heart transplantation at 9 weeks of age. The awareness raised by BSF led his doctors to believe BTHS may be the cause of his heart failure, so they sought the input of a BSF affiliated cardiologist before listing him for a transplant. It was on the advice of that cardiologist that Devin was listed for, and eventually received, the donor heart. Although his cardiac health improved post transplant, BTHS is a multi-faceted disorder, and the work of BSF has allowed us to manage all of the other facets. Finally, the support and camaraderie offered by a group of people affected by such a rare and devastating disorder is made possible by BSF.

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

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

more

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

September 5, 2013

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1 previous review
November 12, 2012

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 st... more

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

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

more

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

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