BY JOE OLENICK email@example.com
Lockport Union-Sun & Journal
Lockport Union-Sun & Journal — The fight against cystic fibrosis is a personal one for the Phipps family.
Jason and Meaghan’s son Mason was born in 2012 with the disease, a genetic disorder that causes thick, sticky mucus to build up in the lungs, digestive tract and other areas of the body. It is one of the most common chronic lung diseases in children.
This year, Jason Phipps is the co-chairman of the annual Great Strides walk, a major fundraiser for the Cystic Fibrosis Foundation. The foundation is the leader in cystic fibrosis research, fundraising, advocating and support for families. The foundation has also been accredited by the Better Business Bureau Wise Giving Alliance.
About 30,000 people in the United States and 70,000 worldwide have cystic fibrosis. In the 1950s, few children with cystic fibrosis lived to attend elementary school.
Today, advances in research and medical treatments have further enhanced and extended life for children and adults with cystic fibrosis. Many people with the disease can now expect to live into their 30s, 40s and beyond.
“We’re making great progress,” said Krystina Burow, development manager for the Cystic Fibrosis Foundation.
Lockport’s edition of the Great Strides walk will be held May 17 at Widewaters. Check-in is at 11 a.m. and the 5K walk starts at noon. Walks will also be held in Tonawanda and Buffalo on the same day.
The Great Strides event is one of the foundation’s biggest fundraisers. Held in 600 locations nationwide, the walks are open to the public and feature on average 125,000 participants. Eight walks alone are held each year in Western New York.
“I decided to step in this year and help,” Phipps said.
And this isn’t the first time the Phipps have tried to make a difference in the cystic fibrosis battle.
One of the things the Phipps must do every day is perform chest physical therapy for their son. That involves tapping 10 areas around Mason’s chest and back, each for three minutes. Doing so breaks up the mucus around the lungs and other organs, allowing Mason to breathe.
After the age of 2, kids with cystic fibrosis wear a vest to help with the therapy. Mason will be measured for a vest soon, Phipps said.
But the chest therapy can be a challenging task to administer, with keeping track of time while holding the child upright. So, to help, Phipps developed a cell phone application that gives the user a choice for different alerts and tracks time for each position on the body, while allowing for rest breaks.
The app, available for the iPhone and iPad, has been uploaded to the Apple Store and can be found by searching “chest PT.” It’s been downloaded over 1,000 times.
For Great Strides, participating teams are encouraged to show team spirit with many of them dressing up with a certain theme. And there was a lot of community involvement in last year’s walk, Phipps said.
“It’s very family oriented,” Phipps said.
Last year’s Lockport walk had 119 participants raising $72,000, Burow said. This year’s goal is to have 200 participants and raise $82,000 for the foundation.
“We have a really great support base of families here in Lockport and surrounding areas,” Burow said.
In 2013, a total of $40 million was raised from the 600 Great Strides walks held across the country. Folks can sign up individually or with a team at the foundation’s site, www.cff.org. Teams can set up their own fundraising sites.
Not only has progress has been made in the fight against cystic fibrosis, but great strides have been made in spreading awareness about the disease, Phipps said.
“When Mason was diagnosed two years ago, I didn’t know what the disease was,” he said. “I would ask a lot of people about it and they had no idea. I’m surprised, in the last two years I rarely find someone who doesn’t know what cystic fibrosis is. I think it’s all of the work the foundation has done.”GREAT STRIDES MAY 17 Check-in: 11 a.m. Walk: noon Distance: 5k Location: Widewaters Park Pavilion Contact reporter Joe Olenick at 439-9222, ext. 6241 or follow him on Twitter @joeolenick.