Jul 5, 2013 By Will Ashton 4 min read

Ever since his younger brother, Sam, 11, was diagnosed with Cystic Fibrosis as a baby, Jack Underwood, 14, has wanted to make a difference.

With the help of his best friend, Angelo Quarture, 13, the two boys have set out to make a difference by making their voices heard in the battle against the genetic disease that causes the body to produce thick mucus that clogs the lungs, obstructs the pancreas and prohibits natural enzymes from helping the body digest and absorb food.

They travelled to Washington, D.C., on June 26 for the 2013 Cystic Fibrosis Teen Advocacy Day, along with Sam and Jack’s father, Dave Underwood.

Through this visit, Jack and Angelo were able to meet face-to-face with several representatives for senators, as well as senators themselves, to discuss the personal struggles of having someone they love be afflicted with CF and also talk to them about the importance of finding a cure.

“I thought that it was a good experience,” Jack said. “I got to see most of the senators and they were actually listening to me. I was able to give them something to listen to.”

Meeting with representatives from the offices of Pennsylvania senators, including Tim Murphy, R-Upper St. Clair, Pat Toomey, R-Erie, and Bob Casey Jr., D-Scranton, the boys were able to talk to them in a personal setting. While most of these visits were with their office representatives, they were able to meet Senator Mike Doyle, D-Forest Hills, and talk to him directly about their cause.

“It was a great learning experience for us,” Dave Underwood said. “Often, you hear about people talking about how the government is a huge mess. But, to me, this was something that looked right.”

While he knew that the boys were nervous, he knew their message was strong and that they were strong-willed and determined enough to make their voices heard loud and clear.

“The whole thing was just a great experience to show the kids that they have a voice,” Dave Underwood said. “They are future voters. They were listened to. They weren’t pushed out of the office. The ones that listened were really engaged in the message that they were giving.”

While Jack had been to Washington, D.C., once before, this first-time visit to the Capitol Building was his biggest act of support of the Cystic Fibrosis Foundation yet.

“It was an opportunity for anyone to go up and talk about their issues,” Dave Underwood said. “It was a very welcoming atmosphere. It was a place to get your voice heard. This is something that is clearly working.”

“It ended up being more than they ever wanted,” said Tiffany Underwood, Jack and Sam’s mother.

Currently, Sam is doing great, according to his family. He participates in activities including the Peters Township swimming team and the Pittsburgh Predator Hockey team, and his family believes that his active nature is what is keeping him well.

“We are really hopeful,” Dave Underwood said. “We’re trying to keep him as healthy as possible, because we are confident that, in a couple of years, there will be a drug that controls this illness.”

Dave points out that advancements in medications like Kalydeco, which has been able to work at a cellular level for four percent of the population and was FDA-approved in January 2012, have been able to push the ability to find a cure further.

“There is a lot of really great new science that is becoming available for kids like Sam in the next few years,” Dave Underwood said. “We see the finish line, so we feel that it is really important now that these kids were up on Capitol Hill fighting this cause. These are some really amazing things that are being done.”

“It’s important because we’re really close to finding the cure,” Tiffany Underwood said. “The more people that are aware of this, the closer we get to finding a cure for Sam.”

For more information on Cystic Fibrosis and the Cystic Fibrosis Foundation, visit www.cff.org.