Cystic Fibrosis Walk Planned For May 18

LAKEWOOD – On May 18, there will be a walk in Lakewood to raise funds and awareness for the Cystic Fibrosis Foundation.

Cystic fibrosis is the number one genetic disease for which there is no cure according to Kristin Schneider, development manager for the Cystic Fibrosis Foundation of Western New York.

“It is generally a lung disease, but it can cause issues with digestion, and pretty much any system in your body that involves skin,” Schneider said. “It’s a pretty complex disease, and basically what happens is that your body can’t remove the salt for the skin. So, a thick, sticky mucus develops in the lungs, and you can’t get rid of all the junk that forms in your lungs.”

This results in lung infections that wouldn’t affect anybody who doesn’t have the disease.

“People who have cystic fibrosis lose about 2 percent of their lung function every year,” she said. “By the time you are 30, you are potentially talking about losing 60 percent of your lung function. That is pretty significant.”

Those with cystic fibrosis are required to take enzymes anytime they eat and breathing treatments to help with their lungs. They also need a special vest which shakes their body and allows them to cough the junk out of their lungs and out of their body. According to Schneider, those with cystic fibrosis need to do one or two hours of treatment before they can leave the house.

The Cystic Fibrosis Foundation is the number one organization that raises money for cystic fibrosis research, according to Schneider. The foundation is dedicated to finding a cure for every single of the thousands of mutations of cystic fibrosis. About 30,000 people in the United States have cystic fibrosis, and is called an “orphan” disease due to it not being very common.

In January 2012, a drug was developed that was founded by the foundation which changes the mutation, so that it’s fixing what is broken, she said. This only affects 4 percent of the cystic fibrosis population, but it is one of the more rare mutations.

“It is improving their lung function, and they are able to gain weight more easily,” Schneider said. “It’s really a game changer. We are not saying it’s a cure, but it is darn close.”

The Great Strides fundraiser is the largest fundraiser the foundation has each year with eight walk sites throughout Western New York. The Jamestown walk goal is $28,000 and for all of the walks in the Western New York area, the goal is $550,000.

The Great Strides walk in the Jamestown area takes place at the Lakewood Rod and Gun on May 18. Registration is at 11 a.m. and the walk begins at noon. The route will head down East Summit, and East Summit turns into West Summit. Then walkers will turn on to Sunset Avenue and come back down West Terrace to East Terrace back to the Lakewood Rod and Gun Club. Afterwards there will be a hotdog barbeque and music.

For more information, call Schneider at 204-2535 or email her at kschneider@cff.org.