Local Angelman Syndrome Group Wins $250K in Vivint Gives Back Project
Organization tops 1,368 charities to win funding.
Updated 4:30 p.m.
Earlier this year, research funded by the Foundation for Angelman Syndrome Therapeutics revealed an FDA-approved drug could cure the rare genetic disorder in mice.
A human trial of the drug would cost $250,000, said FAST chair and Darien resident Paula Evans. Her 6-year-old daughter, Ainsley, was born with Angelman.
Instead of being discouraged by the price tag, Evans was inspired.
"I told the researchers, 'Oh, no problem, because we're going to win the Vivint contest and fund ourselves,'" Evans said.
And they did.
Children with Angelman syndrome are unable to speak and have difficulty with fine and gross motor skills. But despite the daily challenges, they're also characterized by very happy, loving personalities.
"It's ironic. When you look at a child with Angelman syndrome, most often they'll be laughing and they'll be smiling," Evans said. "But Angelman syndrome is no laughing matter."
Just this past weekend, she said two children with Angelman syndrome died — one from a seizure, a common Angelman trait, and another in an accidental drowning.
"Don't let the smiles and the laughs and the giggles fool you," Evans said. "Our children face enormous challenges and they need a lot of help."
FAST competed against 1,368 other charities in the contest, which required people to vote for their favorite organization via Facebook. Through most of the summer, FAST led the voting, ultimately winning with 217,288 votes.
"My dream is that their dream comes true, that they look at this and this research really does work, and they're able to say, 'Man, remember when our kids couldn't do that, and now they can?'" said Vivint Gives Back President Josh Houser. He is also a vice president at Vivint, the home automation company that supports Gives Back.
Regional winners in the contest that each will receive $100,000 are:
- Whittemore Peterson Institute for Neuro-Immune Disease
- Utah Prader-Willi Syndrome Association
- CURED Foundation
- Team Sanfilippo
- Light and Love Home
FAST, chaired by Darien resident Paula Evans, supports research into Angelman, a genetic disorder characterized by an inability to speak, as well as motor and cognitive delays, according to the National Institutes of Health.
At 3 p.m. Central, Vivint will stream the contest results live.