Thirty-thousand people may not seem like a large amount, but for Rachel Pugh it holds significance. According to the Cystic Fibrosis foundation, it represents the number of people in the United States who have the deadly disease. Pugh has known two of these people. For her, that’s too many.
For the third year, Weekender General Manager Pugh is organizing the Weekender’s Cystic Fibrosis Benefit that will take place on Thursday, March 20, at Nightcaps in Edwardsville. The over-21 event will begin at 8 p.m. and will feature a wide assortment of bands, raffle prizes and other fundraising activities. All proceeds will go directly to the Northeastern Pennsylvania Chapter of the Cystic Fibrosis Foundation, located in Whitehall.
Pugh’s part in the fight against cystic fibrosis is a personal one. When she was a young girl she lost a cousin, a woman who was merely in her early 20s, to the disease. Pugh vividly remembers the devastating impact the loss had on her and her family. She thought there was little chance that another person so close to her would go through such an ordeal again. Recently, a baby girl was welcomed into Pugh’s family and was diagnosed with cystic fibrosis not long after her birth. Paige is now two, still battling the illness.
Pugh is determined to raise awareness of this terminal disease, a quiet killer that few are knowledgeable of.
“I’m trying to raise the volume level,” Pugh says. “People need to understand this disease, how to detect it, how to find out if you’re a carrier and how to treat it.”
Cystic fibrosis is an inherited disease caused by a defective gene that makes the mucus in the body thicker than normal. This mucus eventually builds up in the lungs, blocking the airways and causing life-threatening infections. The mucus can also block ducts in the pancreas, stopping natural enzymes from helping the body break down and absorb food.
Respiratory failure is the most common cause of death in people with cystic fibrosis. There is no cure yet, but continued research is helping to provide better treatments, upping life expectancy in those with the disease.
This year, several different bands, spanning many musical genres, will provide entertainment for the event. The diversity of music is different from years prior, as Pugh feels it will appeal to more people.
“We have hard modern rock, country, pop, softer rock, ’80s music,” she says. “I thought this would allow for a wider audience and offer musical entertainment to be enjoyed by everyone.”
Among the acts set to appear are The Tim Johnson Band, The Black Orkid, Fighting Zero, Maybe Someday, M80 and Papercut. The Wilkes-Barre/Scranton Pioneer Promotion team will also be on hand at the event.
In addition to the $7 entrance fee, raffle tickets will be sold in order to raise money. An arm’s length will cost $5, and the winners will be announced that night. Raffle prizes for the event are being provided by various local organizations. Among them are the Pioneers, GP Animations, Marc’s Tattooing, The Ski Corner, Longo Custom Drums and Monster Energy Drink. Bud Light and local radio station 97.9 X are also sponsoring the event.
Those contributing to the cause can be sure that they’re putting their money in the right place. According to Linda Klein Capozello, executive director of the Northeastern Pennsylvania chapter of the Cystic Fibrosis Foundation, approximately 90 cents of every dollar donated goes directly to the program.
It is because of such contributions and funding that researchers are making great strides. Though cystic fibrosis is still a life-shortening disease, life expectancy has increased by four years in the past two months. Most individuals with cystic fibrosis are expected to live to 37 years of age. The foundation goes by the motto, “Adding Tomorrow, Every Day.”
“When you look at the kind of progress we’re making, each dollar matters, each person literally makes a difference,” says Capozello.
The Northeastern Pennsylvania Chapter of the Cystic Fibrosis Foundation is also sponsoring two Great Strides fundraising walks in the area in May. The first one will take place on May 3 at Kirby Park in Wilkes-Barre. Nay Aug Park, in Scranton, will be the site for the second Great Strides walk, which will take place on May 17.
Pugh is thankful for every bit of help she receives and is honored by all the support that has come her way for every benefit she has done.
“I’m very appreciative of everyone who is lending a helping hand in raising awareness,” she says. “It means a lot to see how many people in this community care.”
w
go:
What: The Weekender Third
Annual Cystic Fibrosis Benefit
Where: Nightcaps,
216 West Side Mall, Edwardsville
When: Thursday, March 20, 8 p.m.
Tickets: $7 at the door