Angelman Syndrome Group Nears Finish Line in Vivint Gives Back Project

Families from across the country gathered in Ty Warner Park in Westmont on Tuesday to help the Foundation for Angelman Syndrome Therapeutics (FAST) celebrate a big milestone.

Throughout the summer, the organization nationally alongside dozens of other nonprofits to win up to $250,000 in the Vivint Gives Back Project. 

With nearly 177,000 votes as of Wednesday, FAST, which funds research into the rare genetic disorder, is poised to win the grand prize. 

“It has been a phenomenal year for us,” said FAST Chairman Paula Evans, of Darien. Evans has a with Angelman.

Daily life for families of people with Angelman is rife with challenges. Angelman is characterized by an inability to speak, as well as motor and cognitive delays, according to the National Institutes of Health.

But lately those struggles have been punctuated by miracles.

An FDA-approved drug has recently been found to cure Angelman in mice at a Florida laboratory, Evans said.

The second miracle: A clinical trial in humans will cost just about $250,000—exactly the value of first place in the Vivint contest.

With about one week left—voting ends Aug. 27—FAST has secured the top spot in the Midwest region, which would result in a $100,000 prize. It has consistently held the national lead, however, throughout the competition. (See voting instructions at the end of this story.)

Vivint representatives chronicled Tuesday’s gathering for a video that the home security company is producing.

Keith Semple of the band 7th Heaven performed for the first time live a song he wrote to benefit FAST. All the proceeds from downloads of “Little Angels,” which cost $1.50, will go directly to the group. 

“I just fell in love with these kids and thought there’s got to be something I can do,” Semple said.

He met the group a few years ago when 7th Heaven performed at FAST’s annual gala.

As the music played Tuesday, the families munched on food donated by Jimmy Bannos of Heaven on Seven and Phillies Pizza of Willowbrook, and enjoyed beverages provided by Coca-Cola and Ice Mountain.

Witnessing such generous support from so many sources has brought tremendous hope for Lorena Smith, whose son Quinn, 9, has Angelman.

“I never really thought people were interested in finding a cure. I thought it was just about finding ways to cope,” said the Tinley Park mom. “I just think this is amazing.”

Amy Clark brought her two sons, Timothy, 9, and Brandon, 14, from Batavia to participate in the event.

For her, just as important as the funding is the awareness Vivint’s contest has brought to Angelman.

Although sometimes misdiagnosed as autistic, people with Angelman are highly social, with effervescent spirits. At gatherings, Clark said her sons will grab strangers’ hands and put them together because they want everyone to be friends.

“Sometimes people can be intimidated by [kids with Angelman] because they don’t know what to expect,” she said. “But they’re such loving kids. They just want to love and for everyone to love each other.”

The contest has brought a wave of love for and within the Angelman community. 

“Every night everyone waits to see the voting results,” said FAST Vice Chairman Debbie Guagliardo, of Darien. “People are just really, really coming together.”

To vote for FAST, first you must “Like” the Vivint Facebook page. Then log in to the contest page and vote here: http://www.vivint.com/givesbackproject/charity/43

You can vote once a day every day until the contest ends Aug. 27.

To download Keith Semple's song "Little Angels," visit http://keithsemple.net/ or http://www.cureangelman.org.

For more information on Angelman syndrome, visit http://www.cureangelman.org.