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Donna67

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3 reviews

Review for Barth Syndrome Foundation Inc, Larchmont, NY, USA

Rating: 5 stars  

The Barth Syndrome Foundation has made such a difference to our lives. I feel we owe the health of our son to their hard work and determination. They offer so much help and support and for a rare disease with only approximately 200 boys affected world wide they have incredibly got to the stage of starting clinical trials in the very near future. They are amazing.

Role:  Client Served
 

Review for Barth Syndrome Foundation Inc, Larchmont, NY, USA

Rating: 5 stars  

The Barth Syndrome a Foundation provides wonderful
Support and immeasurable hope. It gives families from all over
the world a place to connect with each other and share the happiness and sadness
that comes with this often fatal and very rare disorder. The conference
put together biannually by BSF is one if the most incredible
experiences a boy with Barth and his family can have. For a non-profit that supports
a syndrome that is so very rare it is very mighty and in a short space of time
it has funded research so we now have hope that our boys will grow to be
Men.

Role:  Client Served
 

Review for Barth Syndrome Foundation Inc, Larchmont, NY, USA

Rating: 5 stars  

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.

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

Role:  Client Served