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October 18, 2013

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October 18, 2013

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

Ways to make it better...

If I had to make changes to this organization, I would...

Win the Megamillions so that we would have the 10-20 million we need to find true treatments and a cure for Angelman Syndrome.

More feedback...

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

November 8, 2012

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November 8, 2012

FAST has helped unify the community that cares about individuals with Angelman Syndrome, with a message of HOPE for a treatment for this devastating neurogenetic disorder. The organization's leadership volunteers the time and skills necessary for running the organization. Many necessary supplies and services are donated, meaning almost all of every dollar donated goes towards our mission of improving the lives of those with Angelman Syndrome and funding research for a cure. Members are empowered and inspired to contribute their own skill sets and resources to assist in the running of the organization and to fundraise creatively. This young and vibrant organization has already supported great progress in awareness and research funding.

More feedback...

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

June 25, 2012

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June 25, 2012

FAST is an amazing group of volunteers who's mission is to help speed the research for a cure/treatment for Angelman Syndrome. The foundation is nearly 100% staffed by dedicated parents of Angelman Syndrome children. Not only has this foundation brought together a community of AS afflicted families, but it has taken a seriously diagnosis of "NEVER-Will-DO's" and turned it around to a feeling of "HOPE". Families can now imagine what their children will be able to achieve in life. They may get to hear their child's voice, they may see their child live without seizures, they may see them live an independent life, but mostly they may get all their lost dreams back again. There is nothing more devastating than to have a child and then have all your dreams and hopes taken away in one breathe of getting the diagnosis of Angelman Syndrome, but now FAST has turned those lost dreams around to being possible. It is hard to share the feelings a parent has when embraced by this group of people. I am lucky to sit on the board of FAST and even more lucky to be able to touch the lives of so many other families who have gone through exactly what I have gone through. The members of FAST the community of supporters is like no other and I am blessed every day to call myself one of them. This foundation has turned my life around and I am a better person, friend and parent for it.

More feedback...

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

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