Fairfield mother turns to tennis to raise money for son's rare genetic disorder
Monica LaMura has raised $10,000 for Angelman Syndrome research so far.
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Fairfield resident Monica LaMura is hoping that her lifelong love of tennis will also help scientists find a cure for Angelman Syndrome - a rare genetic disorder that her son Colin was diagnosed with when he was just 18 months old.
LaMura, who works for the United States Tennis Association's Eastern Region, says Angelman Syndrome is "a malfunction of this one gene causes significant challenges neurologically, including seizures, sleep disturbances, balance issues, speech issues."
She also learned that the condition is very rare - only showing up in about one in ever 15,000 people - with around 500,000 known cases worldwide.
"Right now, there are no approved therapeutics, so it was very confusing not having answers," she said. Finding the Foundation for Angelman Syndrome Therapeutics gave us a lot of the answers and hope we needed."
LaMura says at the top of that list is the fact that there are 23 drugs currently being developed to treat Angelman Syndrome.
"Scientists believe that of all neurological conditions, Angelman Syndrome can be cured," she said. "I think really it's about find ways to invest in the science."
In the year since the diagnosis, Colin has been getting therapy at Cheshire Fitness Zone in Orange, while Monica has started a series of tennis-themed fund raisers called "Rally for a Cure."
"Anything that we can do to raise awareness and attention to this rare disease feels so important to my family," LaMura said, "and being able to do it in a way that brings people joy and laughter and fun, has just been wonderful for us."
So far, she says the events have raised around $10,000.
"Every dollar matters and this is such an incredible cause, because there's a cure waiting for us on the shelf," LaMura said. "We just have to get it off, and get it to the people."
LaMura will be hosting a rally for a cure event with tennis games and clinics in June in Fairfield, and then another in July in Trumbull.
Donations are also accepted directly online.
