Get your razors ready for the Cystic Fibrosis Mustache Bash
Saturday August 17, 2013 | By:Lizz Schumer |
SPRINGVILLE — Anyone who has ever longed to grow a mustache can now say he is doing it for charity, when the Cystic Fibrosis Mustache Bash comes to Papa Jake’s Saloon on Aug. 25. Mustaches will be available, for those who are unwilling or unable to sprout their own, as well as food, drinks, a silent auction, 50/50 raffle and more.
Organizer Kathy Goodrow said that she has wanted to host an event in Springville “for some time,” since she stepped down as chairperson of the Western New York chapter of the Cystic Fibrosis Foundation.
After scaling back her involvement in the Great Strides walk, that raises funds for cystic fibrosis research, she said she wanted to bring an event to Springville. Goodrow brainstormed with her daughter, Ashley Nicole, who has CF, and the mustache party was born.
“It’s not your typical fundraiser. This fundraiser will benefit the foundation, which raises funds for scientific research and patient care. I’m driven by the fact that my daughter has CF, but this fundraiser isn’t just for her, alone. It won’t benefit just one person, but the money will go to everyone.”
Event tickets will include a set menu, although Papa Jake’s regular offerings will also be available, for purchase. There will also be a mystery wine grab and gift certificate grab, in addition to a silent auction, door prize and 50/50 raffle.
“For the wine grab, we’re going to have a bunch of wine bottles in paper bags with the necks tied up, so you can’t see what’s inside, and a basket of corks. There will be numbers on the corks that correspond to the bottles, and some of them won’t have any numbers,” Goodrow explained. “That way, you could end up with a $10 bottle of wine or a $40 bottle of wine. It’s all chance.”
The gift certificate grab will involve a roulette wheel, with the numbers’ on the wheel corresponding to gift certificates.
“If you don’t like yours, you can trade,” Goodrow said, with a grin. “It makes it all a little more fun. We’ve also got two, beautiful homemade afghans for our silent auction; a private dinner, made by a local chef, at your home; NASCAR memorabilia and lots of good stuff. We’re hoping people will come, make some bids, try for some wine or a gift certificate and have a good time.”
Music will be provided by Dive House Union, a local band that has toured the East coast and performed at venues such as Kleinhan’s Music Hall in Buffalo. The band has what Goodrow called “a bluesy, Eric Clapton-like style,” and she said she is excited to get them to play, since the band has only played in Springville once before.
Goodrow said that the idea for the theme came from when her daughter’s friend, Evan Brand, visited her in the hospital, last October.
“He went down to the gift shop and bought these pink mustache stickers, that were for breast cancer awareness,” Goodrow said. “My daughter thought they were a blast, and they played with them for hours. Everyone who came to visit her had to wear a mustache, and it just made the whole experience more fun. We thought, since mustaches are sort of a trend now, this would be a fun theme for our fundraiser, too.”
The first 100 people through the door will receive a chocolate mustache, although Goodrow said that participants are invited to “grow your own and bring it with you, if you’re so inclined.”
The Goodrow family is partnering with Peter Waterman, a fellow CF patient, and his family. Waterman, who is 53, is an inspiration for her daughter, according to Goodrow.
“Peter has beat the odds. The life expectancy for someone with CF is usually mid-30s. Peter is a grandfather. My daughter looks at him and says, ‘that makes me believe that I can do it, too.’”
Cystic fibrosis is an inherited chronic disease that inhibits the lungs and digestive system, affecting approximately 30,000 children and adults in the United States. It is caused by a defective gene and its protein product, that cause the person’s body to create unusually thick and sticky mucus that clogs the lungs and can lead to life-threatening lung infections, in addition to obstructing the pancreas and interrupting the production of natural enzymes that help break down and absorb food, according to www.cff.org.
Goodrow said that the mission of the CFF is to help find new medications to fight CF and maybe someday, find a cure.
One of the recent developments, according to Goodrow, is a new drug called Kalydeco, or VX-770, which was first developed in 2006, to attack the root cause of CF, by working on a cellular level to open chloride channels that do not function correctly in CF patients. In 2008, phase 2 studies showed improvement in patients with the G551D gene mutation. In 2012, the food and drug administration approved Kalydeco for patients with that mutation, and began phase 2 for people with the most common mutation, Delta F508.
“It takes a long time for a drug to get through the FDA channels,” Goodrow said. Because Waterman and her daughter do not carry the mutation for which the drug has been approved, more funding and research is needed, to help those patients and others like them.
“We want them to have the opportunity to try this drug, in the future,” Goodrow said. “Ashley and Peter both go to the lung center at Women and Children’s Hospital of Buffalo, which is one of the top-notch lung centers in the country. My daughter takes a lot of medications, to help her digestion and a lot of extra vitamins.”
Despite her illness, Goodrow said that her daughter is driven. “She’s going to [Erie Community College] and wants to go into the pharmaceutical field. She wanted to be a nurse, but because she would have been exposed to too many infections, she had to give up that dream,” Goodrow said. “She wants to be a mom, watch her kids grow up, all of that stuff. What we all want for our kids.”
The Cystic Fibrosis Mustache Bash will take place from 3 – 8 p.m. on Aug. 25 at Papa Jake’s Saloon, located at 243 West Main St. in Springville. Tickets are on sale at S&S Taxidermy, Papa Jake’s and Anything Printed or by calling Goodrow at 863-8016 or Kim Schuster, who is also helping to organize the event, at 860-5887.
Anyone who is interested in making a direct donation may contact Gia Coone, executive director of the CFF at 204-2535 or via email at firstname.lastname@example.org. The organization can be found online at wny.cff.org.