A Walk To Remember
LAKEWOOD – Those looking to support a cause which directly impacts area residents living with cystic fibrosis will have an opportunity to walk to raise funds for research this weekend.
The annual Cystic Fibrosis Foundation Great Strides Walk is scheduled for noon Sunday at the Lakewood Rod and Gun Club, 433 E. Terrace Ave. in Lakewood. The event will feature live music by a student band, a hotdog barbecue, basket drawings and awareness-building programs.
According to Kristin Schneider, development manager for Cystic Fibrosis Foundation of WNY, the event has been held in Jamestown for more than a decade, and is one of the eight walks the foundation hosts in Western New York. The Great Strides Walk is the foundation’s biggest fundraiser of the year both locally and nationally.
“We have a great base of families in Jamestown and the surrounding areas,” said Schneider. “These walks really help to fund the research that is happening for cystic fibrosis.”
At the event, participants are asked to turn in any money they have raised from their own fundraisers or to make a donation before walking, as there is no charge to participate. Registration begins at 11 a.m. Preregistration is encouraged, but not required.
“We’d never turn someone away who wanted to come support the mission,” said Schneider. “There is no cost to participate, but we ask that those who do at least bring some type of donation. A $100 donation will get you a Great Strides Walk t-shirt, which signifies that you have helped at a significant level.”
A family member of someone with cystic fibrosis generally speaks at the event to help attendees understand the daily struggle that those living with the disease endure. The foundation’s walk chairman, Jeff Pagett, of Randolph, whose 10-year-old daughter Brynn lives with cystic fibrosis, will speak at the event.
“He will discuss what his family is going through and thanks everybody for their participation,” said Schneider. “So, there is definitely some mission things happening at the event.”
Pagett lives in Randolph with his wife, Jennifer, and their three children: Luke, 8; Brynn, 10; and Mason, 12. Brynn, who has lived with cystic fibrosis since her diagnosis at birth, has participated in the walk every year with her family.
“Cystic fibrosis receives no federal funding for research so all of the money that we raise goes directly to research – 90 cents out of every $1- without it who knows where we would be,” said Pagett. “The walk is a time when you can get together with everybody, and it’s nice to bring people together around a common cause. It’s meant a lot to me because I’m a teacher, and my students and the National Honors Society at Southwestern have really rallied behind my family.”
According to Brynn, her favorite aspect of the walk is that people come even though they don’t have to, which is inspiring to her. It’s also an opportunity for her to meet others living with the disease.
“It’s fun because they really relate to you,” said Brynn.
Every day Brynn does a breathing treatment at least twice a day for half an hour each. She wakes up every morning to do it herself, she said. She also takes medicine to dilate her lungs, as well as wearing a vest that shakes her for a half hour to loosen the mucus in her lungs. She is occasionally hospitalized as a result of infections in her lungs.
“It’s definitely made me a stronger person because it lets me learn more and help myself become capable and independent,” said Brynn.
Even though Brynn struggles with the disease every day, she makes an effort to stay healthy by participating in many afterschool activities including: softball, cheerleading, dance, basketball, school plays and an academic competition called “Odyssey of the Mind.” She hopes to attend college to study medicine so that she can help others.
According to Gia Coone, executive director for Cystic Fibrosis Foundation of WNY, the event also helps area residents understand the importance of supporting a foundation that strives to ensure community members are impacted by the research funded by initiatives such as the Great Strides Walk.
“Some of the folks have been walking for a while, and the event helps connect the dots as to why they are walking – it’s really a celebratory day for the community,” said Coone. “The money we raised in Jamestown helps to fund research that is really impacting people right here in Western New York.”
MAKING AN IMPACT
According to Coone, cystic fibrosis is the No. 1 inherited genetic disease for which there currently is no cure. The disease ravages the lungs and digestive system of those living with it, and to retain a level of health patients are required to spend hours per day doing treatments and taking medications.
People with cystic fibrosis lose about 2 percent of their lung function every year, and those are the ones who are living healthy lifestyles, said Coone. One of the current treatments for those living with the disease is to wear a vest for 30 minutes at a time that vibrates to loosen the mucous that builds up in the lungs. But, the digestive system is also affected, causing cystic fibrosis patients to be required to take enzymes before eating anything because they cannot break down the food on their own. There are 35,000 individuals in the United States who are diagnosed with the disease, and 10 million people who carry the disease who may or may not know it. The way cystic fibrosis is inherited is when both parents have the a recessive gene. The gene is passed on to children who have a 25 percent chance of developing cystic fibrosis.
When the Cystic Fibrosis Foundation of WNY was founded in the 1950s the average life expectancy for a child born with cystic fibrosis was between 5-6 years old.
“Because of the research of the Cystic Fibrosis Foundation we have what we call ‘adding tomorrows,'” said Coone. “Through investing in science we have come up with new therapies and treatments that have extended the life and quality of life for those living with cystic fibrosis. Today, the average life expectancy is about 38 years old for somebody diagnosed with cystic fibrosis. But, what we ask folks is 38 years a lifetime – is that enough?”
The foundation has had some significant breakthroughs in the last year and a half, and one of its research projects has been fast-tracked by the FDA, said Coone.
“It could be a game changer for people living with cystic fibrosis,” said Coone. “So, we’re really at a point where every dollar counts because it gets us that much closer. What we’d hate to know is that there was a cure there, and we just didn’t have the money to fund the research.”
For more information call 204-2535 or visit www.cff.org/Chapters/wny.