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An Incredibly Easy Way to Raise Awareness about a Rare Disorder

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Most of us associate St. Patrick’s Day with parties, shamrocks and the luck of the Irish. Jen Randolph hopes that, one day, the holiday will stir up images for her fundraising campaign, Phelan Lucky.

Jen and Eric Randolph’s son, Jack, was diagnosed with Chromosome Ring 22 disorder, a form of Phelan-McDermid syndrome, at the age of 14 months. At the time, Jack was one of only 80 people with the disorder. Currently, there are 1,400 people in the world with Phelan-McDermid—two in Delaware.

Jack, now 14, has severe cognitive disabilities. “He is nonverbal, he does walk and has a ton of autistic traits,” Randolph says. He attends the Meadowood Program at McKean High School. 

With so little known about Chromosome Ring 22 and Phelan-McDermid, Randolph decided to raise awareness. In 2014, the Randolphs and friends wore shirts that read “Phelan Lucky” to the Trolley Square St. Paddy’s Day Loop. She sold 400 of the shamrock shirts she created at www.booster.com and raised $8,000. All funds go directly to the Phelan-McDermid Syndrome Foundation.

Sales and funds have grown steadily ever since. By 2016, local celebs such as Elena Delle Donne and Jack Markell were posting photos on Facebook wearing their Phelan Lucky shirts. So were Jeff Garland from “The Goldbergs” and Phil Simms, former quarterback of the New York Giants. In 2016, Randolph says, “we sold just under 2,800 shirts and raised $50,000.”

At least 80 people at the 2016 loop wore Phelan Lucky shirts, Randolph says. She hopes to see as many or more this year. “It’s our chance to get out and enjoy all our hard work.”

The shirts, $25 each, are on sale Jan. 16–Feb. 6. Visit www.booster.com/phelanlucky2017

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