Good Neighbor Awards: Cystic Fibrosis Foundation of Western Pennsylvania

May 10, 2016

In Washington County, fourteen year old Sam Underwood plays hockey year round; he’s on the ice in winter, and in-line skating throughout the summer. Try-outs for the Peters Township High School hockey team are right around the corner, and Sam is a strong contender. But hockey isn’t his only sport; golf and fishing are also favorites. “We take an annual salmon fishing trip every September,” says Sam’s dad, David Underwood. 

Sam UnderwoodBut while Sam appears to be a very regular teen on the outside – he is also engaged in the fight of his life. Sam has Cystic Fibrosis; a disease that his dad says requires the care and attention of “another full-time job. He takes 400 pills per week, and does physical therapy for his chest every day. He doesn’t look or behave any differently than your average teenager, but in order to stay healthy he has to follow a strict regimen that involves a number of specialized medicines and therapies.”

A diagnosis of Cystic Fibrosis is typically revealed by two years of age, and requires a lifelong battle to quell symptoms, quiet the disease, and allow patients to breathe. But for parents of children who have CF – there is new hope. Today, patients are living longer than ever before, with breakthrough therapies more than doubling life expectancy and researchers gaining ground on a cure. 

Locally, the Cystic Fibrosis Foundation of Western Pennsylvania is focused on families, many of them in Washington County. Some are new; others, like the Underwoods, have been living with CF for years and are now part of a local community sharing information and support. According to Executive Director Mary Pat Joseph (Pat), “We’re working with new families every day. The hope, and the despair, that they bring with them is very motivating to me. And I’m so happy to be able to say honestly to a new mom and dad that life for patients with CF is so much better today than it was even just ten years ago.” 

Cystic Fibrosis is a life-threatening, genetic disease that causes persistent lung infections and progressively limits the ability to breathe. The defective gene triggers a build-up of thick, sticky mucus in the lungs and pancreas – clogging airways, impeding digestion, and creating a pathway for infectious bacteria and disease.  Many patients eventually require a lung transplant, and until recently, most did not survive past their teens. That is no longer the case. Included in the work the foundation does is the accreditation of specialized care centers, and today, there are both pediatric centers – and adult centers.

“The adult centers are new,” says Pat. “There were many years when there were no adults with CF. But now, with nearly 50% of the CF population at age 21 or over, the adult centers have become very important.”  

The median age for survival is 37. “But we have many patients living into their 40’s, 50’s and beyond.” 

Pat recalls when, back in 1989 before she worked for the foundation, she heard on the news that researchers had identified the gene that causes Cystic Fibrosis. “And I remember thinking – wow, that’s amazing. And my next thought was, this will be a quick fix!”  She would come to learn that while the discovery was of great significance, it would not lead to a simple fix. However, decades of additional research have recently yielded new therapies that are dramatically improving patients’ lives.   

CFFDavid Underwood points to the foundation as a positive force for his family and others. “The funds raised from walks, events and other grass roots programs have been utilized by the CF Foundation to discover life changing medicines and therapies that are helping to keep Sam and others healthy. We also have access to the [accredited] Cystic Fibrosis Center at Children’s Hospital where Sam is cared for by a team of experts. Every dollar raised is of critical importance because the CF Foundation is not supported by any government funding. And this is such an exciting time because we are getting closer to finding new medicines for Sam that will do an even better job of controlling his symptoms. Companies like Range Resources are joining us at a historically significant time and will get to share in the CF Foundation’s success and celebrate with us when a cure is found.”

There is much work ahead. But Pat Joseph is very optimistic.

“One of the things I’m really proud of is that our foundation is heralded as one of the best and most savvy business models out there for curing a chronic disease, and foundations for other diseases have been able to create models like ours that have helped them progress faster than they would have otherwise. I’m proud that we’re helping to fight chronic disease across the board. And Range has been an amazing partner and ally to us in the fight against CF – helping us to not only raise dollars but also to raise awareness. And I’m excited – a cure for CF is in sight. New technology has made it possible for the foundation to set a timeline, and a strategic plan. It’s probably 20-25 years away. But it will be a cure. And when that day comes, it’s going to be a great day.” 

Range Resources recognizes the great work of our Good Neighbor, the Cystic Fibrosis Foundation of Western Pennsylvania. We are honored to continue a partnership focused on better patient outcomes, raising awareness, and closing in on a cure.   

To read more about the Good Neighbor Awards here, visit Range's Community Engagement section of the website. 

Read about the other Good Neighbor Award Recipients here: