The Christmas season is comprised of various traditions that people hold close to their heart. In Oyster Bay, one of those traditions has become the HPS (Hermansky-Pudlak Syndrome) Network’s Christmas concerts held annually at Oyster Bay High School Performing Arts Center. The true spirit of the season comes alive on stage and it remains in the hamlet all month long.
Now in its 13th year, the show will feature traditional Christmas carols, original Christmas music as well as modern Christmas classics. The band performing is known as J led by vocalist JoAnn Criblez of Bayville. Two performances will be held, the first on Friday, Dec. 5 at 7:30 p.m. and an encore performance Sunday, Dec. 7 at 2 p.m. Admission is free and donations will be accepted for the HPS Network.
HPS is a rare genetic disease, which causes albinism, legal blindness and a bleeding disorder. In some individuals, the disease may progress to include inflammatory bowel disease, kidney disease and, ultimately, pulmonary fibrosis (hardening of the lungs). Donna and Richard Appell of Oyster Bay Cove founded the HPS Network in 1992 in response to the difficulties that they faced trying to find medical research for their daughter, Ashley Anne.
In 1986, Ashley was born with this rare medical disorder and was hospitalized for almost two months just before her third birthday after developing the Crohn’s-like colitis that is typical with this disease. The HPS Network is the only organization serving HPS families internationally. Through education, outreach, advocacy and research support they follow their mission of finding a cure.
One Big Family
The warmth that is generated at the concert every year stems from the family-like atmosphere among the musicians and the Appells. Over the past 13 years, they’ve become one big happy family that’s unified in finding a cure for HPS.
“This is our biggest fundraiser of the year and I can easily say our most amazing,” says Donna Appell. “The dedication and talent in this concert equals the best Broadway show you have ever seen. It’s the love they sing with that makes their music so wonderful. Their love for the HPS people is medicine. It gives them encouragement and the strength to carry on.”
The band has raised more than $230,000 to date for the network, with 100 percent going directly toward research for a cure.
“From the very beginning, our partnership with the HPS network has been magical,” says Criblez. “I am always grateful to have an outlet to perform, but being a part of it as a humanitarian is really what keeps me coming back. I see firsthand what a difference we are making and that is incredible.”
Part of the fun of the evening is the band’s relationship with their faithful audience.
“Seeing the same faces coming back year after year to fill those seats in the auditorium is a gift. At the start of the show it really feels like you are coming home,” says Criblez. “We could never do this without the love and support from the amazing audience that comes out every year to begin their Christmas season”
The concert, which is open to people of all faiths, is free and will be followed by a complimentary dessert reception on opening night.
For more information about the HPS Network, call 1-800-789-9477, write to: One South Road, Oyster Bay, NY 11771, email: info@hpsnetwork.org, fax: 516-624-0640 or visit: www.hpsnetwork.org.
