Phelan Lucky campaign supports research for rare syndrome
Cape High senior Elle Nauman is one busy 18-year-old.
She manages the girls’ volleyball team, plays unified basketball and track, and participates in the Best Buddies Club. Through the Sussex Consortium occupational program, she works at the Lewes library, Beebe Healthcare, and Grotto Pizza, and as a teacher’s aide with district pre-K students.
“I love school, and I like working with kids the best,” Elle said.
One unique feature about Elle is that she is one of 2,800 people worldwide and one of four Delawareans diagnosed with Phelan-McDermid Syndrome, a rare genetic condition caused by a deletion or variation of the q arm of chromosome 22.
Symptoms of PMS can be moderate to severe in terms of development and intellectual impairment; no medications, drugs or therapies exist specifically for PMS. About 75 percent of people with PMS have been diagnosed with an Autism Spectrum Disorder, according to the Phelan-McDermid Syndrome Foundation.
Elle was diagnosed with PMS when she was 9 years old. Just four years later, she spoke on the state House and Senate floors to advocate for awareness of PMS. Legislators responded by declaring March 17, 2017 Phelan-McDermid Syndrome Day.
Just about everyone in the district knows Elle, said her mother and Cape Assistant Superintendent Jenny Nauman. Because of their experiences with Sussex Consortium students like Elle, district students are inclusive of peers, Jenny said.
“The Consortium makes our district awesome,” Jenny said. “Our kids are so accepting. They care about Elle and want to support her.”
Just a few years before Elle spoke to the General Assembly, Jen Randolph in New Castle County founded the Phelan Lucky campaign.
In 2014, Randolph wanted to create a T-shirt that her friends could wear to the St. Patrick’s Day Loop in Wilmington’s Trolley Square that would be suitable for the celebration and also solicit questions about PMS, which her son Jack was also diagnosed with.
“With the help from a dear friend, Phelan Lucky, an online T-shirt campaign, was born,” Randolph said. “Nine years later, our little fundraiser has grown into a global movement calling for support, awareness and funding required for crucial research.”
Since its inception, the campaign has sold more than 41,000 shirts and raised $575,000 to help fund research on the syndrome.
“The shirts have come to mean so much more to our families,” Randolph said. “The Phelan Lucky brand has become synonymous with inclusion, compassion and support.”
The Phelan Lucky campaign has been an annual spring tradition in the Cape district, where students and staff wear their Phelan Lucky shirts to contribute to PMS research and support their friend Elle.
“I’m happy to see them wear the shirts because they care about me,” Elle said.
Help spread awareness and contribute to PMS research by purchasing a Phelan Lucky tank top, T-shirt or sweatshirt, available in a variety of styles and colors. Go to customink.com/fundraising/9PL and wear it on St. Patrick’s Day, Thursday, March 17. Orders must be placed by Sunday, Jan. 23.
To learn more about Phelan-McDermid Syndrome, go to pmsf.org.
