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54 Reviews
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November 9, 2012
5 people found this review helpful

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November 9, 2012
5 people found this review helpful

With out BSF I would be isolated and lost. My eldest son was born with Barth Syndrome and the doctors knew so very little about it. The foundation has enabled us to reach out and speak with people who just understand. It is such a comfort to know that somebody else just "gets it". It is also wonderful to know that there are so many wonderful people who at the click of a button will be there to share their knowledge and lend their support. I will never forget the first conference we attended when my son saw other Barth Boys for the first time and tall ones at that! It was like all of his Christmas's had come at once. The change in him was amazing. A small group of people have made a very big impact and I am so very grateful to them.

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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?

Quite well

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

My family has seen how the ideas of a few people became a research and support model that other groups admire and utilize. We feel that every dollar donated brings a cure closer, and that in the meantime, families receive the information and support that sustains them. A dear family friend has Barth Syndrome, and we're so proud of this young man (John W.) for taking a leadership role in the organization. He's an inspiration to everyone that knows him, and the main reason why we donate.

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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

November 9, 2012
4 people found this review helpful

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November 9, 2012
4 people found this review helpful

Barth Syndome Foundation is a FAMILY of HOPE & LOVE that is centered around boys affected with Barth. This family consists of the boys, their parents, grandparents, aunts, uncles, friends, doctors, researchers, volunteers and more. I became involved because my husband does research on Barth. I was welcomed immediately & felt a tremendous desire to help. BSF focuses on finding a cure while loving these boys & their families through the process- connecting real people with resources, friendships & lifeline.

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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?

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.

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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?

2012

November 9, 2012
6 people found this review helpful

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November 9, 2012
6 people found this review helpful

I'm a Board Member, but also have a son with Barth syndrome. For many years we knew no one else who was affected with Barth syndrome. My family and I were completely alone. Now, we have families from all over the world in the Barth syndrome community. There really are no words to describe the impact BSF has had on our lives--in many ways. We now have an extended family who understand completely what it's like to live with a such a rare, serious and potentially life-threatening disorder. BSF is small, but proactive, and we never give up--we are working hard to find answers about this disorder by funding research, as well as providing family services, raising awareness, holding an amazing conference every two years that combines families, reserachers, and physicians, and more. We are very grateful to have BSF in our lives!

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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

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 from the very beginning, watching it grow from a small network of concerned families, scientists and physicians to a non-profit organization with chapters around the world. I grew up with two younger brothers affected by Barth Syndrome and for a long time, we felt very isolated because we knew of no one else affected with this disorder. Since the Barth Syndrome Foundation came into being that isolation has gone away. We have this wonderful community where people can ask questions and share their experiences through the e-mail listservs or social media. We know so much more now about Barth Syndrome than we did when my brothers were little, or even ten years ago. We cheer on our boys when they've reached important milestones and accomplishments, and we embrace and comfort each other when one of our guys loses his fight with Barth Syndrome. There is support available for everyone touched by this disorder, from the diagnosed individuals to the parents and grandparents, from the siblings like myself to the scientists researching the disorder and physicians providing care for the individuals. It's incredible to be a part of this group, this "family."

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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

November 9, 2012
5 people found this review helpful

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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

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 9, 2012
6 people found this review helpful

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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.

More feedback...

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

November 9, 2012
6 people found this review helpful

more

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.

More feedback...

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

November 9, 2012
5 people found this review helpful

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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.

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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