My Nonprofit Reviews

When my daughter was diagnosed at 11 months, I was saddened there was likely nothing to be done about it. I am a developmental biologist by trade so I knew that if the brain formed incorrectly, the cards had been dealt. Imagine my surprise and delight when the research began to show that Angelman Syndrome is not a developmental defect, but a biochemical defect. In other words, my daughter's brain formed fine, it just wasn't working properly.

With that knowledge, when I was asked to join the Foundation for Angelman Syndrome Therapeutics (FAST) at its inception, I did not hesitate. I serve as the Chief Science Officer for FAST. Since then we have funded over 1.2 million dollars in research in just three years, have funded preclinical work that led to a clinical trial, and funded the clinical trial which ended this past March. We are a small group of dedicated parents, friends and family members in an incredible community determined to change the world for our loved ones and anyone who is dealing with a defect in learning and memory.

Through the Foundation we have also provided educational summits to the community free of charge. These summits covered communication and literacy for those with Angelman Syndrome in 2012, and this year will focus on Sleep Issues and Challenging Behaviors. We are taking any and all steps possible to make the lives of those with Angelman Syndrome the very best they can be.

Join us and be part of the miracle - www.CureAngelman.org

More Feedback