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68 Reviews
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November 15, 2012
5 people found this review helpful

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November 15, 2012
5 people found this review helpful

I joined the BSF after my son was diagnosed in February, 2012. The outpouring of support we received was tremendous. Since joining we have also learned so much more about the disease through the foundation not to mention the amount of research they are funding to try and find better treatments for our boys. The foundation is literally a lifesaver.

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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 13, 2012
8 people found this review helpful

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November 13, 2012
8 people found this review helpful

Barth syndrome foundation came into my life when my brother was diagnosed in 2010. BSF not only targets support for the affected boys, but also the siblings. It's really nice to be able to connect with others who are going through similar situations. They have treated us like family from day one. The members of BSF are more than willing to help with support and information to those in need.

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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 13, 2012
7 people found this review helpful

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November 13, 2012
7 people found this review helpful

I met Lindsay Groff through a mutual friend and she introduced me to the Barth Syndrome Foundation (BSF). I didn't know much about the foundation but she really inspired me to want to know more. I explored on the website and found out more about the disease. When Lindsay asked me if I was interested in volunteering to help out the organization I jumped at the opportunity. I think the foundation is great. There aren't a lot of resources out there for this particular disease and I think the BSF is making huge strides to help in the fight. This foundation may be small but they have a huge voice. I'm very proud to say I could help out the BSF.
November 13, 2012
7 people found this review helpful

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November 13, 2012
7 people found this review helpful

With BSF I found a very supportive Community. I feel not alone anymore. They are of great importance for the charing of experience about the Syndrome.

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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 11, 2012
7 people found this review helpful

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November 11, 2012
7 people found this review helpful

A good friend's family has been impacted by Barth's Syndrome for 30 years. At the time their son was diagnosed there was little scientific research, knowledge, or emotional support for families. Since the creation of BSF these problems have been erased at an amazingly quick pace. Now there is research, efficient dissemination of information, and emotional support for families around the globe. I've been impressed with the difference BSF has made in a relatively short amount of time. Now families have hope, both on the medical and emotional fronts.

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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

November 10, 2012
7 people found this review helpful

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November 10, 2012
7 people found this review helpful

When my youngest brother was just a baby, he was life-threateningly ill and nobody was really sure why or what he had. It was years before we got an actual diagnosis of Barth Syndrome, and without a diagnosis it was both scary and lonely. When we found the Barth Syndrome Foundation, it provided a special kind of hope, and an incredibly invaluable support network for people who thought their family was alone in the world with their child's illness. Bringing the families affected by this extremely rare disease together to pool resources and experience has helped both families and their doctors know better what to try, what has already been tried, what warning signs to look for, and has given hope for finding a cure. Their research has been invaluable, and the work done at educating physicians and providing them with up-to-date information on the research helps families all over the world access better treatment and more hope of survival than they might otherwise have. My brother is doing very well considering the severity of his illness, and, most importantly of all, I still have him with me - and the value of that gift is immeasurable.

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
7 people found this review helpful

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November 9, 2012
7 people found this review helpful

A very special friend of mine has Barth Syndrome. I have learned so much about this Foundation; from the very beginning to the amazing achievements they have made. The Foundation continues to grow trying to find answers for families. The families connected with the Barth Syndrome Foundation are given encouragement and hope knowing that they are not alone in a difficult journey.

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
6 people found this review helpful

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November 9, 2012
6 people found this review helpful

My husband only recently was diagnosed with Barth Syndrome. For years, we had no idea where his problems really came from and now we have answers. The Barth Syndrome Foundation has helped us in so many ways from encouragement to helping us find the answers we need.

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 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

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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
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.

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?

2011

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