Mom runs Facebook campaign to raise awareness of rare disease


STATEN ISLAND, N.Y. — As the mother of a child with a rare disease — Phelan-McDermid syndrome (PMS) — Debra Papagni is tired of hearing people ask “What is PMS?”

That’s why she recently launched a Facebook campaign to both raise money and bring awareness to the disease. Her son, Drew Denmark, 9, is one of 1,400 people who have been diagnosed with PMS worldwide. In addition, he  and 85 percent of his peers are on the Autism Spectrum.

“There’s limited funding for continued research,” said Papagni. 

“It affects a small part of our population, which is exactly the reason why we must raise awareness, and the reason behind creating such cute tees. Raising money for the foundation has now become a priority of mine since my son was diagnosed in 2010. My hope is to help my son, and all those affected with PMS,” she added.

She and her teenage children — Julia, 17, and Justin Denmark, 15 — each year take part in the Autism Speaks Walk. This year, Papagni went one step further in their fundraising campaign.

She knocked on local business owners’ doors asking them to donate a minimum of $100, and she promised to print their name on the back of aqua blue team shirts that say: “TEAM [?] DREW.”

With more than 30 people already signed up to be part of “Team Drew” and more than 100 shirts sold, Pagagni hopes to raise awareness about both PMS and autism on Oct. 22 at the Autism Speaks walk at the College of Staten Island at 9:30 a.m.

A BRIGHT BLUE SHIRT

“With the help of “Special Tees,” a Staten Island print shop that employs special needs adults, I designed a bright blue tee and created an event on Facebook inviting friends and family to join us at the walk, and I asked them to purchase the T-shirts,” she said.

“I added a few bucks to the cost of the shirts so I can donate the excess to Autism Speaks. I then thought, ‘Why not solicit some local Staten Island businesses to sponsor the tees in exchange for a donation to the Phelan McDermid Foundation?’  This gave me an opportunity to support both causes,” she added.

A RARE DISEASE

Drew is a student at P373, located in PS 58, in New Springville.

PMS is a rare genetic condition caused by the deletion of chromosome 22 or the mutation of the SHANK3 gene. Like others with PMS, Drew has severe cognitive disabilities and is non-verbal.

The characteristics of the disease — named for the two doctors who first identified the condition, Dr. Katy Phelan and Dr. Heather McDermid — generally include low muscle tone, accelerated growth, and severely delayed speech.

SPONSORING BUSINESSES

Said Papagni: “I would like to send a special thank you to A Friendly Face Kidz, Campania Cold Fired Pizza, Cafe Luna, DeLucas Italian Restaurant, Angelina’s Ristorante, Zio Toto, Aunt Butchies of Brooklyn, The Loft at Ariana’s Grand, Lobster Joes, Top Tomato Superstore, Portobello Cafe, Villa Monte, Cabo, Cigar Vault Emporium, Mr. Ciao, Ponte Vecchio, Domenico’s Pizzeria, AnA Custom Closets, Wicked Florist and Pure Blu Pilates & Yoga Studio for their generous donations to the Phelan McDermid Foundation.

“Ella Goldin, the CFO of A Friendly Face Kidz, was my biggest contributor, donating to both Autism Speaks and the PMS Foundation and supplying her entire staff with T-shirts to support Drew,” added Papagni.

To learn more about PMS, visit www.pmsf.org!

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