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61 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 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.

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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 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!

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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 15, 2012
4 people found this review helpful

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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!

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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 15, 2012
4 people found this review helpful

more

November 15, 2012
4 people found this review helpful

An excellent organisation providing unique information and support to affected individuals and their carers. They are a pioneering force in scientific research and strive constantly towards bettering the care of affected individuals via an ever evolving flow of information for healthcare professionals. As the mother of an affected boy I have received invaluable guidance and support from 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?

2012

November 15, 2012
5 people found this review helpful

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November 15, 2012
5 people found this review helpful

I received a phone call from the Family Services Director of the BSF the same day my wife and I registered online with the foundation. Our 19 month-old son was officially diagnosed the day before, and we felt as if our lives (and his) were turned upside down. We were scared and unsure of the future. That call made a big difference, and since then, the BSF has continued to exceeded my expectations in every way possible. Its Board of Directors, it's employees and its members are all working together to help find a cure and to make life for those who deal with Barth Syndrome better. Their biennial Family and Medical Conference literally sets the standard for other such events. I can’t truthfully imagine my life now without the BSF’s involvement. We are huge fans.

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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 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 15, 2012
4 people found this review helpful

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November 15, 2012
4 people found this review helpful

I was diagnosed Barth Syndrome about 15 years ago. BSF helped me to understand and cope with the problems i had to deal with. Because information is shared and the members are very supportive.

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How would you describe the help you got from this organization?

A lot

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

When our son was diagnosed with Barth Syndrome, we were terrified. BSF not only helped us through some of the toughest times in our lives, it also showed us hope and support beyond anything imaginable. If you are one of the few affected families around the world with this rare disease, you feel alone and misunderstood by everyone. In most cases, not even the Drs that are working on saving your child's life know anything about Barth Syndrome. The info and expert advice, coupled with medical and scientific advisory board and all the researchers working on the cure are INVALUABLE!!! You will never meet another group of people as dedicated and unwavering as BSF!

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

more

November 15, 2012
3 people found this review helpful

The Barth Syndrome Foundation came into my life just this year when my son was born in March 2012. Having my first child was an amazing experience, but once he showed signs of heart failure it brought me to my low. I was happy but yet worried, especially when your two day old son goes to the NICU after he was born. Thank god we caught his heart issues and breathing issues right away, otherwise it would of been no good for us going home with him ourselves. It scares me everyday with this deadly disease my son has called, Barth Syndrome. As of now he is doing good, thanks to all of his numerous doctors and constant doctor visits. It takes alot of strength to stay strong and keeping strong not knowing what will happen each day with my son, but I do and that's all I can do. The Barth Syndrome Foundation has been a tremendous help with dealing with this disease. Everytime I am worried, I talk with other parents who are worried about the same thing with their son, it's nice because we all understand where eachother is coming from. It's nice we actually all became a family. I was told to take each day by day and that's what I am doing. My son is doing good now, but I don't know what the future holds, but I hope it holds a cure for these wonderful, amazing little boys who are soo strong and who are LOVED unconditionally.

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

The Barth Syndrome Foundation has continually guided us since our son was first diagnosed at the age of 18 months. He is now 8 1/2 years old and doing very well - much because of the connections and supports that we have with this wonderful group of caring professionals, volunteers, and parents.

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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