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54 Reviews
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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!

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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

November 15, 2012
3 people found this review helpful

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November 15, 2012
3 people found this review helpful

BSF was a lifeline to our family, we were no longer alone in this new chapter in our lives. I am not quite sure that such an organisation has came such a long way in such a short time ever before and that is testament to the strength of the people who are so passionate about helping all of the boys and young men affected by Barth Syndrome. We will always be grateful from the bottom of our hearts to each and every person that we have met along the way, thank you!

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?

2012

November 15, 2012
5 people found this review helpful

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November 15, 2012
5 people found this review helpful

I´m Miguel´s father. Miguel was( he ascended to the heaven) 5 years old; he was 4 when we diagnosed BS. From this moment we knows what´s can happened with BS thanks to your´s web. For us BSF was THE HOPE. We were not alone.

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Will you volunteer or donate to this organization?

Likely

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

A lot

When was your last experience with this nonprofit?

2012

November 9, 2012
6 people found this review helpful

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November 9, 2012
6 people found this review helpful

I have been involved with the Barth Syndrome Foundation since its first being in 2000 in Baltimore I IWith BSF we found another family, our BARTH FAMILY. With BSF i'm not lose, I found hope and help. I have had two sons with Barth syndrome (one whom did not have the opportunity of being diagnosed and passed away in 1991. My second son, Pedro, now 19, is doing well, Portugal

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?

2012

November 9, 2012
5 people found this review helpful

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November 9, 2012
5 people found this review helpful

I have been involved with the Barth Syndrome Foundation since its first being in 2000 in Baltimore, MD. I immediately made a connection with the families that I met during this meeting. At first I volunteered doing whatever it was I could do to help raise awareness and funds. I then was invited to join the Board where I served for one term. I now am an employee of the Foundation, and truly believe that I have found my calling. I have had two sons with Barth syndrome (one whom did not have the opportunity of being diagnosed and passed away in 1989. My third son, Derek, now 19, is doing well, and followed at Boston Childrens. I have found a family around the world who TRULY UNDERSTANDS what it means to have a child with this disease.

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?

2012

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