PITTSTON — Jimmy Alba has had facial hair since he was a teenager and only two times in his life been without it. Now there is a chance he might go a third time with a clean-shaven face.
Alba, 41, is attempting to raise money for Cockayne Syndrome (CS) awareness by making the stipulation that if he can raise $1 million by Christmas Day, he will shave his beard off completely.
“Christmas Eve is my first official ‘yeard’,” said the Pittston resident. “Which means I went a full year without trimming or shaving the beard. I was taking the sides off because I’m not really a full beard guy; I’ve had a goatee since I was 14, and I’m just not comfortable with a full beard. Since I was shaving it off, I decided to try and raise some money and figured if I could raise $1 million I would shave it all off.”
As of Dec. 10, Alba has raised $160, but he is using social media, such as Facebook and Twitter, to get the word out.
His reasoning for raising money for CS is because of his two friends, Jeanie Decker, 40, and her husband Scott, 44, who both lost their children, Zachary and Faith, to the disease.
Zachary, they said, was born in 1994 and passed away in 1999, while Faith was born in 2004 and passed in 2011.
According to the Genetics Home Reference website, CS is a rare disorder characterized by short stature and an appearance of premature aging. Features of this disorder include a failure to gain weight and grow at the expected rate, abnormally small head size, and impaired development of the nervous system.
Affected individuals have an extreme sensitivity to sunlight and even a small amount of sun exposure can cause a sunburn. Other possible signs and symptoms include hearing loss, eye abnormalities, severe tooth decay, bone abnormalities, and changes in the brain that can be seen on brain scans.
CS occurs in about two per million newborns in the United States and Europe.
The Pittston couple have been trying to raise money for CS research and do fundraisers and events, including an annual pool tournament at the Dupont VFW. All of their earnings go to the Share & Care Cockayne Syndrome Network, with whom Jeanie said she does volunteer work with.
According to its website, Share & Care Cockayne Syndrome Network is a volunteer organization that was founded in 1981 and raises money for CS research.
Part of the reason they put so much effort into their work is to help people detect Cockayne Syndrome as it often goes misdiagnosed.
“A lot of kids get misdiagnosed having cerebral palsy, but it’s really Cockayne Syndrome,” said Jeanie. “By getting the word out we can raise money and the Share & Care Cockayne Syndrome Network is working with the National Institute of Health about having a drug trial with a medication that can help reduce the symptoms and help reduce the severity of the condition.”
Both Scott and Jeanie carry the CS gene, but they show no symptoms.
“We both have one good gene and one bad gene,” said Jeanie. “The good gene takes over, that’s how that works.”
Although it was a while before they realized Zach had CS, Scott said he knew as soon as Faith was born she had the disease.
“When she came out, she opened up her eyes and the light hit her eye the right way and I said, ‘She has it,’ because I could see the cataract in her eye,” he said. “As soon as I saw it I knew instantly she had it.”
With various events and ways they try to raise money and awareness for CS, Scott and Jeanie are grateful for Alba’s help in process.
Although he’s doing this for a good cause, Jeanie tried to talk Alba out of putting his beard on the line to raise the $1 million.
“I wanted him to make sure he really wanted to do it because it could possibly happen and he’d have to shave it,” said Jean.
“I told him he’s lucky I don’t have the $1 million myself or else it’d be gone,” joked Scott.
Alba said he does fundraisers for charities and friends all the time, and that there was just something about being helpful that made him love doing it so much.
“I think it’s those who don’t have, like to give,” he said. “Since I don’t have the actual $1 million, I want to raise it.”
Alba also made it known that if he does have to shave off his beard, he’ll start growing it back right away.
Reach Jimmy Fisher at 570-704-3972 or on Twitter @SD_JimmyFisher