What we won and what we lost.

To those of you who voted in the Vivint Gives Back project….THANK YOU! It was announced  that FAST (Foundation for Angelman Syndrome Therapeutics) won the top prize of $250,000! And those dollars will soon go to begin trials for a new medication that could, in a year or so, bring an actual treatment for Maddie’s disorder. It was a very good day for Angelman Syndrome.

The excitement over this news in the AS community is offset by the incredible sadness that two of our families had children pass away this past week, a little boy from seizures and a girl to accidental drowning.  Our kids might seem happy, but the danger is always right there.  Hold your kids tight.

Again, thanks to everyone and a huge thank to Vivint and their employees.

Please vote!

Have you heard about the Vivint Gives Back Project? $1.25 million will be donated to charities. Facebook voting goes through August, and I need you to vote every single day for the Foundation for Angelman Syndrome Therapeautics (FAST) .  www.HelpSaveTheAngels.com/FAST/vote 

Did you know that Angelman Syndrome is caused by a single missing gene, UBE3A, which affects a certain enzyme production that is also abnormal in Alzheimer’s and Parkinson’s? So understanding UBE3A may help with these conditions as well. Vote for FAST in the Vivint project!

The charity with the most votes gets a $250,000 donation, and the top charity in each of 5 regions gets a $100,000 donation. That could do so much for AS research!

http://www.vivint.com/givesbackproject/charity/43

Let’s get the word out!  Vote!  Vote!  Vote!

AS awareness in the news

 

Colin Farrell was on the Ellen show during “hunk week”. 

http://www.youtube.com/watch?v=OV7YGd9Rewg

An article about the show was on yahoo too! 

http://omg.yahoo.com/blogs/goddess/colin-farrells-son-diagnosed-with-angelman-syndrome-because-of-water-fascination/657