Walk-A-Thon May 21—

Friends And Residents Invited To Fight CF With Team Cameron

By Shannon Hicks

Cystic fibrosis is a disease that continues to affect millions of Americans. CF is a life-threatening genetic disease that affects the lungs and digestive system; pne in every 3,500 birth is affected by CF.

Cameron Powers, who turned 3 on April 28, has cystic fibrosis. The Newtown resident has two breathing treatments daily, each of which can last up to 30 minutes, and she wears a vibrating chest during her morning treatment, which helps with airway clearance. She also takes enzymes mixed with applesauce before every meal.

In January, Cameron took another step in the treatment of her disease when she received a feeding tube.

“That gives her extra nourishment at night,” her mother, Patty Powers, said recently. “Hopefully she won’t have that forever.”

Cameron does not let her disease or its treatments slow her down too much. Patty calls her 3-year- old daughter a tomboy who loves gymnastics, her karate lessons, play groups, and story time.

“She doesn’t know anything is wrong,” said Patty.

What the Powers family — which also includes Cameron’s father Steven, brother Shane, and sister Riley — is hoping is that one day the disease will no longer be a part of life for Cameron or anyone else. That’s why the Powerses participate in Great Strides: Taking Steps to Cure Cystic Fibrosis, walking events sponsored by and fundraisers for The Cystic Fibrosis Foundation. There are 14 Great Strides events taking place across Connecticut this season, including one in Danbury on Sunday, May 21. Check-in for that event, which is being held at Rogers Park, near The War Memorial, will begin at 9 am. Walking begins at 9:30.

Team Cameron already has members, but more are welcome to join. Residents of Newtown are also being invited to visit Rogers Park the day of the walk to cheer Team Cameron and everyone else on.

“Team members can do whatever they want to,” Patty said. “People can join us to walk, raise money, or just come cheer for us.

“They don’t have to walk, but it’s a fun thing to do when you’re there. People get scared when they hear it’s five miles, though, but it seems to go by very quickly when we’ve done it.”

The CF Foundation welcomes teams and individual walkers for its Great Strides events.

This will be the third year the Powers family participates in Great Strides. Patty has done fundraisers for a few years at Weston Middle School, where she is a physical education teacher.

“Events like [Great Strides] benefit research,” Patty said. “We hope someday CF will only be a nuisance, and not always fatal.”

The CF Foundation promises that at least 90 cents of every dollar raised goes directly toward “vital CF programs.” According to SmartMoney, The CF Foundation “is a charity that won’t waste your money.”

Forbes has also recognized The CF Foundation’s innovative approach to research. By offering milestone-driven research awards, the foundation stimulates the development of new CF therapies that are having a profound impact on thousands of young lives. When The CF Foundation began, few patients lived to attend elementary school. Thanks to research and care supported by The CF Foundation, the median age of survival is now in the mid-30s.

More than 35,000 residents of the United States have Cystic Fibrosis, and one in every 20 people — more than 10 million Americans — are symptomless carriers.

“So if you marry a carrier of the disease, it’s a one in four chance,” said Mrs Powers.

The good news these days for Cameron, says her mother, is that “she’s doing really well right now.”

For additional information about Great Strides, including the Danbury walk on May 21, visit CFF.org/great_strides. To support Team Cameron in person, contact Patty Powers at 364-1880. If you cannot make it to Danbury but would like to make a donation, checks should be made payable to The CF Foundation and can be sent to The Powers Family, 24 Lincoln Road, Newtown CT 06470.