Angelman Syndrome Day Brings Hope to Fair Lawn Mom

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 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 Foundation for Angelman Syndrome Therapeutics to donate 20 percent of proceeds on Friday to AS research when diners present a flyer at participating restaurants. Roughly 100 locations nationwide are participating in the fundraiser, including one at the Willowbrook Mall in Wayne.

"It's such a big deal!!!" said Fair Lawn resident and local business owner, Heather Polyi, punctuating her text with triads of exclamation points. "Our rare disease finally got a DAY all its own to raise money and awareness!!!"

Polyi, owner of the River Road makeup studio, Glam Spot NJ, has a two-year-old daughter with Angelman Syndrome.

Children born with the rare genetic disorder are unable to speak and suffer motor difficulties as well as debilitating seizures. Despite the challenges they face, the children are also characterized by an eternally sunny disposition.

Polyi's daughter, Lyra, at nearly three years old, cannot sit independently, crawl or walk, or feed herself. She still drinks from bottles (that she cannot hold) and eats pureed food, Polyi explains on the Facebook page she created for her daughter.

She can't speak, is unable to properly regulate her body temperature, suffers from frequent respiratory illnesses and is beginning to get seizures.

"Through all of this," Polyi writes. "SHE IS SMILING!" 

International Angelman Day—and FAST—have a famous champion in actor Colin Farrell, whose son James was born with AS. 

“It’s a really beautiful thing to mark this day as a celebration of our children and all they have achieved and as an opportunity to introduce more people to both the beauty inherent in and the trials faced by those with AS,” Farrell said in a statement. “Anything anyone can do to raise awareness is greatly appreciated. No gesture is too small. No such thing as the insignificant word or deed.

“I wish all the hardworking folks at FAST all the best with the endeavor and all the hard-working and hard-loving parents around the world a collectively successful and unified day.”

Now is a critical moment for fundraising within the AS community.

Until recently, AS was thought to be untreatable. But within the next month, researchers at the University of South Florida will conclude one of the first clinical trials into a treatment. FAST funded the trial with a $250,000 grant awarded during the 2011 Vivint Gives Back Project.

The trial tested the effects of the antibiotic Minocycline on AS symptoms. Minocycline was shown to improve many of the symptoms in mice—and, at least preliminarily, it seems to be helping with behavior, attention and communication in humans, too.

Twenty-four kids participated in the first round. Next up will be a larger trial to see if Minocycline has a similar effect on a wider sample. 

“This is the first step of many,” FAST chairwoman Paula Evans said, “but it’s our first step, which is terribly exciting.” 

Polyi and her family will be at the Willowbrook Mall Ruby Tuesday this Friday at 8:15 p.m. If you'd like to support Lyra directly to help offset her medical costs -- some of them are not covered by insurance -- Polyi is selling Team Lyra t-shirts for $20.

If you’re in the Willowbrook Mall area and want to help FAST on Friday, click the flyer in the photo box above, print it out and bring it with you when you dine at Ruby Tuesday. Visit www.cureangelman.org for a full selection of flyers for all the Ruby Tuesdays participating in the fundraiser.

If you want to donate but can’t get to Ruby Tuesday, you can participate in the 15/15/15 campaign by contributing $15 on Feb. 15 for the 15^thchromosome—the one at the root of AS. Head to www.cureangelman.org to donate.

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