Fifty years ago, the life expectancy of with someone with cystic fibrosis was 7 years.
Today, the life expectancy is 37.
That improvement is due to organizations like the Cystic Fibrosis Foundation its motto is Adding tomorrows every day.`
Orange County Choppers, which was founded in 1999 and rose to fame after a popular television show on Discovery Channel in 2002, was contracted by Airgas, Inc. to create a $70,000 custom motorcycle, at Airgas’ expense.
Airgas, with a location in Latham, is the largest distributor in the U.S. of industrial, medical and specialty gases, and fundraises for the Cystic Fibrosis Foundation.
Last week, the bike was at Crossgates Mall in Albany, Price Chopper in Clifton Park, and Wal-Mart in Halfmoon. The three events were expected to raise about $2,000. Wal-Mart pledged to match any money raised at its location.
Dave Schaffer, a welding process specialist with Airgas, travels the country with the motorcycle raising money for the Cystic Fibrosis Foundation. He said that events with the bike last year raised $230,000 nationwide.
The group sells memorabilia such as hats, autographed posters, and photos with the motorcycle to raise money.
Pictured in the autographed posters are Paul Teutul Sr. and Paul Teutul Jr., the founders of Orange Country Choppers. Also on the poster is Eric Cassalina, 15, a family friend of the Teutuls who has cystic fibrosis.
Eric’s younger sister, Jenna, who also had cystic fibrosis, died earlier this year at age 13.
`It’s pretty tough when it’s kids, you know?` Schaffer said.
Rebecca Santoli is the executive director of the Northeastern New York chapter of the Cystic Fibrosis Foundation. She got involved in the foundation last October when a friend told her about the organization.
`I immediately fell in love with it when I met the families and patients,` Santoli said. `We all now have a personal connection [to the disease].`
Three hundred people have cystic fibrosis in the Capital District, and there are 30,000 Americans with the disease. Cystic fibrosis is a genetic disease, which causes the body to produce unusually thick mucus that clogs the lungs and obstructs the pancreas.
Santoli said that symptoms of the disease start almost at birth, but today newborn screening for the disease helps parents and doctors manage the disease earlier than ever.
There are 25 new drugs in development in what the foundation calls the `pipeline of promise,` and 90 percent of donations to the Cystic Fibrosis Foundation go directly to research for those treatments.
Santoli said that the Northeastern New York chapter raised about $750,000 last year.
John VanLuyk is an account manager for Airgas and travels across the country with the bike raising money.
VanLuyk said Airgas is involved in cystic fibrosis because the issue is important to the company’s chairman and CEO, Peter McCausland.
`It’s the charity he decided to put his money in and his attention behind,` VanLuyk said. `It’s almost a $4 billion company.`
For information about the Northeastern New York chapter of the organization, call 783-7361 or visit the Web site at www.cff.org/Chapters/neny/.
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