What the NJ Devils want you to know about Turner syndrome
NEWARK — Next month, during one of their games at the Prudential Center, the New Jersey Devils will host a Monmouth County-based organization committed to raising awareness about a random chromosomal disorder that affects one out of every 2,000 women.
Turner syndrome, which only affects women, often goes undiagnosed or is diagnosed later in life even though it can be detected at birth. In New Jersey, one baby girl every eight hours is born with the spectrum disorder, of which effects may include short stature, cardiovascular disease, kidney and thyroid issues, diabetes and hearing deficiencies.
Alexis Gratton, health initiatives coordinator for the Turner Syndrome Foundation in Hazlet, said the average age of diagnosis is 15, but part of her group's mission is to identify and manage the disorder at a much earlier point than that.
"It is something to think about if you know a child who's unusually short for their age, or (has) a lot of frequent ear infections," she said.
Most of the girls and women suffering from Turner Syndrome who Gratton has interacted with can and do lead long, happy, normal lives — provided they follow care guidelines set by their physicians.
"They're all flourishing, they're all thriving, they're living complete, healthy lives," she said, adding that those afflicted are limited "only by their own dreams."
Seeing as comprehensive care is needed throughout the lifespan of a woman who has Turner Syndrome, TSF's main focus this year is pursuing further research to support adult care, an area which Gratton said is lacking. The organization, which New Jersey first recognized as a nonprofit in 2009, supports various education and research initiatives to increase professional awareness.
As part of that, the group is partnering with the Devils during their Saturday, Feb. 18 home game (7 p.m.) against the New York Islanders. It won't be TSF's first such fundraiser with the NHL team.
"They have a community outreach program where they offer discounted tickets to us, we can sell them, and then we get to keep a percentage, so it is a fundraising event for us, which is great," Gratton said.
Gratton characterized the evening as a great opportunity for advocacy and awareness. People who order discounted game tickets through TSF get seats in a dedicated group section (including a chance to be featured on the Jumbotron alongside information about the nonprofit), a poster, and for $5, a food voucher worth $10 at the concession stands.
To purchase tickets, and also donate, fill out a volunteer application, or find out how you can host an event for TSF, visit turnersyndromefoundation.org.
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