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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 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

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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?

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.

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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?

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!

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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?

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!

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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 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

more

November 15, 2012
4 people found this review helpful

BSF is so helpful to those who are struggling to find answers after receiving the shock of a diagnosis. Please help BSF to continue its wonderful work.

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

more

November 15, 2012
4 people found this review helpful

BSF has helped so much with so many issues. Being able to discuss with other parents issues that we face everyday and over time, makes dealing with this disease more manageable. Support, Information and a personal touch go a long way in helping to ease the stress you feel when you child is critically ill. The president has been there for me and my family for 13 years, the first of which were very critical, and now will be there for me and my family once again as we got through another critical medical issue with our son. I am so thankful for the Barth Syndrome Foundation and the list serve that keeps us together and keeps us strong for our children. A very fine group with a very great mission!

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

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