Paula Evans didn’t flinch last year when she learned it would take $250,000 to fund a clinical trial for a treatment for Angelman syndrome, a rare genetic disorder that affects her 8-year-old daughter, Ainsley.
"I told the researchers, 'Oh, no problem, because we're going to win the Vivint contest and fund ourselves,'" Evans said at the time.
FAST is at another critical moment—and there’s another contest with a $250,000 prize to help them push AS research even further.
The foundation is participating in the Chase Community Giving program, a Facebook contest that starts Thursday.
How to vote:
A quarter-million dollars will go a long way toward helping FAST reach its goal of funding a $1 million grant for its newest initiative—FAST Integrative Research Environment (FIRE). FIRE, Evans said, will be a “collaboration of all the best and brightest people working on Angelman syndrome research.
“Major things are going to come from that,” she said.
Developing an AS therapy will require research in the fields of genetics, biochemistry and more because it’s such a complicated disorder. Children born with AS are unable to speak and have trouble coordinating movement. They also suffer devastating seizures.
When scientists from different areas conduct research in a silo, Evans said they might have to wait years before colleagues’ work is published so they can take the next step in the process. On top of that, funding for research into rare disorders—AS affects roughly one in 15,000 children—is tough to come by.
But through this collaboration, Evans hopes to cut out the lag time because experts across fields will be working together in real time, supported by private funding.
“It’s a system where one person is not waiting for another, for another, for another,” she said.
FAST plans to direct $1 million a year for the next five years toward FIRE. It got a boost this summer from a $250,000 anonymous donation and is scheduled to launch the consortium in about a month.
Evans said the timing is right to double down on research efforts. The clinical trial in humans for an antibiotic shown to alleviate AS symptoms in mice is about halfway done. She expects Edwin Weeber, PhD, the lead researcher, to present preliminary results at the annual FAST gala in December.
“The reality is it can be cured,” Evans said. “It’s just a matter of figuring it out. To get the scientists to work collaboratively—that’s going to propel it forward exponentially.”
Ten runners up in the Chase contest will each get $100,000. There are also dozens of $50,000, $20,000 and $10,000 prizes up for grabs.
The contest runs through 11:59 p.m. Sept. 19.
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- Colin Farrell Gets American Giving Award for Supporting Local Angelman Syndrome Group
- Local Group Funds Clinical Trial for Angelman Syndrome Treatment