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Shelia M.1

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1 reviews

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

Rating: 5 stars  

My son has been living with Barth syndrome now for 20 years. We were told early in his life that he might not live past 4 years of age.
But because of The Barth Syndrome Foundation's work, efforts and research, our foundation is now offering clinical trails for new medications and we are really close to seeing gene therapy offered to potentially cure our boys and men. We never thought we would see this in our son's lifetime.
The Barth Syndrome Foundation (BSF) has given our family hope for a cure and has given us guidance on how to help our son live a wonderful life. We also have an entire new family of amazing people in our life that we have met through the Barth Syndrome Foundation. Getting to see most of these folks every 2 years at BSF conference helps us feel no longer alone in this fight against Barth Syndrome.
We will win this fight because of these Amazing Barth boys and Barth men who have participated in the research to gain knowledge about this disease. I know The Barth Syndrome Foundation will not give up until we win this fight.

Thank you BSF‼
Shelia Mann, parent & volunteer

Role:  Client Served