5 people found this review helpful
BARTH SYNDROME FOUNDATION INC
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November 9, 2012
5 people found this review helpful
We are so glad that we found BSF! We were warmly welcomed into what is commonly referred to as a family. I see why the BSF is described as such and is composed of families, physicians, scientists, donors and volunteers around the world.. This overwhelming, mind boggling disease has a group of warm, caring, compassionate and INFORMED people. It is such a reassuring feeling to know there are others who have been exactly where we have been.
We all have such a unique story, yet they are all very similar. If someone is newly diagnosed with Barth syndrome, contacting BSF is a MUST! There you can find lifesaving information and support beyond expectations
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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
6 people found this review helpful
November 9, 2012
6 people found this review helpful
I have been working with the Barth Syndrome Foundation for several years. Not only is it inspirational to see the families working together for support and of course, their common goal, but the dedication of the Management and the Board in all facets of running the organization is outstanding. Everyone works together tirelessly to achieve their mission.
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Will you volunteer or donate to this organization beyond what is required of advisors?
Definitely
How much of an impact do you think this organization has?
A lot
Will you tell others about this organization?
Definitely
When was your last experience with this nonprofit?
2012
6 people found this review helpful
November 9, 2012
6 people found this review helpful
The Barth Syndrome Foundation (BSF) is a dynamic organization that has created a community for families who have a child diagnosed with BTHS, a rare genetic disorder. Because BTHS is so rare, it is important for BFS to be the voice for families in research, education and general awareness, that will one day lead to a better understanding of the disorder and perhaps a cure.
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Was your donation impactful?
Definitely
How likely is it that you would recommend that a friend donate to this group?
Definitely
How likely are you to donate to this group again?
Definitely
When was your last experience with this nonprofit?
2012
5 people found this review helpful
November 9, 2012
5 people found this review helpful
When we learned that our son had Barth syndrome, we were utterly terrified. The little amount of research we had done showed us just how rare the disease is and we were afraid we would be able to find very little support in caring for him. Almost none of his doctors had ever heard of it! But then we discovered the Barth Syndrome Foundation and their community listerv. We were encouraged to attend the upcoming bi-annual conference for both families and medical professionals. What we discovered was an organization centered around the families of affected individuals. We were welcomed with open arms by complete strangers. Being able to meet and talk one-on-one with the leading doctors and researchers of Barth syndrome was helpful beyond measure. The Foundation is exceptionally passionate about getting the word out about Barth syndrome and making sure that the community is supported not only by its members but also by the doctors working hard to find a cure.
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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
5 people found this review helpful
November 9, 2012
5 people found this review helpful
Before the Foundation I had never met anyone else with Barth Syndrome. This group Welcomed me in with open arms, sharing information and advice. Words cannot describe how grateful I am for all this group has given me.
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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
6 people found this review helpful
November 9, 2012
6 people found this review helpful
I chose to donate to the Barth Syndrome Foundation after reading one of their newsletters. I felt compelled to give to this incredible organization when I read the stories about these wonderful families. I was actually moved to tears, reading about the challenges and triumphs that these boys and young men experience. I know that my dollar will go far with this small, dedicated group! I look forward to reading the next issue of the newsletter to learn more. Thanks for all that you do to help those affected by this rare disorder.
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Was your donation impactful?
Definitely
How likely is it that you would recommend that a friend donate to this group?
Definitely
How likely are you to donate to this group again?
Definitely
When was your last experience with this nonprofit?
2011