Monday, February 11, 2013
The Foundation for Angelman Syndrome Therapeutics, based in Downers Grove, will help raise money for AS research through a nationwide fundraiser at Ruby Tuesday—and with the endorsement of actor Colin Farrell.
Valentine’s Day may be all about Cupid, but starting this year, the day after will be dedicated to the angels. Friday, Feb. 15 is the first annual International Angelman Day, a time when members of the Angelman syndrome (AS) community will celebrate the successes of the past year and look forward to the future with a fundraising campaign. Ruby Tuesday has partnered with the Downers Grove-based Foundation for Angelman Syndrome Therapeutics (FAST) to donate 20 percent of proceeds on Friday to AS research when diners present a flyer at participating restaurants. Roughly 100 locations nationwide are involved with the fundraiser, including the Downers Grove Ruby Tuesday, 1570 Butterfield Rd. “There’s such a sense of community that everyone …
Wednesday, February 15, 2012
The study will evaluate the effectiveness of an FDA-approved antibiotic in treating symptoms of the rare genetic disorder.
A day many parents of children with Angelman syndrome never thought they would see is now just a few weeks away. In March the University of South Florida will begin a clinical trial in humans of a drug shown to treat symptoms of Angelman syndrome in mice. The study will be funded by the Foundation for Angelman Syndrome Therapeutics, which was founded by Darien’s Paula Evans, whose , was born with AS. Until recently AS was thought to be an incurable genetic disorder that impacted children’s speech and motor skills. It also causes devastating seizures. The syndrome manifests when a single gene on the maternal 15th chromosome is either absent or fails to switch on. But despite that prognosis, Evans said she was always determined to fight …
Monday, December 12, 2011
Farrell received the first leadership award from Chase Bank's American Giving Awards, which aired Saturday on NBC.
The good vibes generated at last week’s Foundation for Angelman Syndrome Therapeutics (FAST) gala continued Saturday when actor Colin Farrell was honored for his work with the organization. Chase Bank gave Farrell its first American Giving Award Leadership Award for the support he’s given to the organization, chaired by Darien’s Paula Evans. Evans started FAST four years ago to raise awareness and funding for research into Angelman syndrome (AS), which is characterized by impaired speech and movement. Ainsley, Evans’ 7-year-old daughter, was born with AS. The American Giving Awards, which aired Saturday on NBC, recognized grassroots organizations through a Facebook contest that culminated in the distribution of $2 million worth of …
Monday, December 5, 2011
The actor explained his decision to go public about his son's condition at the Foundation for Angelman Syndrome Therapeutics annual gala.
It’s hard to maintain any privacy when you’re a celebrity of Colin Farrell’s stature. But the In Bruges star kept a deeply personal secret until just a few years ago. Farrell’s 8-year-old son, James, was born with Angelman syndrome (AS). Among other challenges, children with the rare disorder can’t speak and experience some motor difficulties. They are also prone to debilitating seizures. But despite their struggles, the children are also indefatigably joyful and loving. “(James) has made my life so much richer and so much more worthwhile and has given it such meaning that my life alone never had,” Farrell said. Farrell shared the story of why he decided to go public about James at the Foundation for Angelman Syndrome Therapeutics (FAST) …
The Foundation for Angelman Syndrome Therapeutics held its fourth annual gala Saturday with special guest Colin Farrell at the Hyatt Regency in Chicago.
Most places she goes, Darien resident Paula Evans has to do a lot of explaining about her 7-year-old daughter, Ainsley: why she can’t speak, why someone must constantly watch over her, why she has seizures. But there’s one night a year when Evans doesn’t have to do any explaining. “You guys know all about the challenges our kids face,” she told the 500 guests at the fourth annual Foundation for Angelman Syndrome Therapeutics (FAST) gala Saturday at the Hyatt Regency in Chicago. Evans founded FAST to help fund research toward a cure for Angelman syndrome, a rare genetic disorder that manifests when a single gene on the maternal 15th chromosome is either absent or fails to switch on. Children born with AS have motor difficulties and are …
Tuesday, September 6, 2011
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. Vivint executives announced Tuesday that FAST won the $250,000 grand prize in the Gives Back Project — exactly the amount of money needed to fund the clinical trial. Children with Angelman syndrome are unable …
Thursday, August 18, 2011
The Foundation for Angelman Syndrome Therapeutics gathered Tuesday in Westmont as they move closer to winning $250,000 in funding.
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 has been competing 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 6-year-old daughter, Ainsley,with Angelman. Daily life for families of people with Angelman is rife with challenges. Angelman is characterized by an inability to speak, as well …
Wednesday, June 22, 2011
As of Wednesday morning, FAST leads with more than 15,500 votes.
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 …
Thursday, May 26, 2011
Angelman syndrome is a rare disorder, but a cure is in sight. With the help of her organization, FAST, Paula Evans hopes to raise the money to make it happen.
With a grin on her face, 6-year-old Ainsley Evans bounded toward her friend Gina, wrapping her in a warm hug as Gina arrived at Ainsley’s Darien home. Ainsley’s got a lot of love to share with the world, but she also has a powerful story that her mother, Paula Evans, hopes will soon reach a wider audience. Ainsley was born with Angelman syndrome, a rare genetic disorder characterized by cognitive delays that impact both movement and speech. It’s a little known and often misunderstood disorder, which doctors frequently misdiagnose as autism or cerebral palsy. But unlike those disabilities, researchers believe a cure for Angelman is near. They know what needs to be done. They just need the money to be able to do it. Evans co-chairs the …
carrie esposito 7405 richmond
2:55 pm on Tuesday, February 12, 2013
May God bless these beautiful special children. more ›