Monday, August 1, 2011

Local Angelman Syndrome Group Moves Closer to $250K Grant

Local Syndrome Group Moves Closer to $250K Grant

As of Wednesday morning, FAST leads with more than 15,500 votes.
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One of the many frustrations parents of children with Angelman syndrome face is how close they are to a cure. Yet a lack of funding for research continues to be a roadblock to making it happen. 
Researchers in Florida already have cured mice of the rare genetic disorder, which is characterized by cognitive delays that impact both movement and speech. 
Now they need to re-create that cure in humans.
The Foundation for Angelman Syndrome Therapeutics, co-chaired by Darien’s Paula Evans and Debbie Guagliardo, is in the running for a $250,000 grant to help fund research for an Angelman’s cure. Evans is the mother of 6-year-old Ainsley, who was born with Angelman.
Home automation company Vivint is running a contest to award $1.25 million in funding to various charities throughout the U.S. and Canada.
As of Tuesday afternoon, FAST was in the lead for the $250,000 grand prize, with more than 14,000 votes. Vivint will announce a winner Aug. 20.
Yvonne Hamrick, of Fort Worth, TX, entered FAST into the contest, which she discovered last year.
“I’m just a mom and saw this as something I could do,” she said.
While Hamrick's 7-year-old son Joshua has Angelman, she said even people without a direct connection to the disease are responding resoundingly to the contest.
Children with Angelman are unable to speak and often experience motor delays. Some, such as Joshua, can’t walk. They are also more prone to seizures, one of the leading causes of death in Angelman patients.
Yet despite the challenges they face, people with Angelman are also characterized by a remarkably positive, sunny disposition.
“Our kids are so happy and just draw people into their world,” Hamrick said.
Guagliardo, who serves as FAST’s chief financial officer, said she’s seen the same thing, with people all over the world voting to support FAST.
“People are really rallying together and the community is becoming much tighter and larger as a result,” Guagliardo said. “This has been unbelievable for awareness already, and there are [nine weeks] left.”
To vote for FAST, first you must “Like” the Vivint Facebook page. Then log in to the contest page and vote here:
You can vote once a day every day until the contest ends in mid August.
For more information on Angelman syndrome, visit

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