Above and Beyond: Your Team PH Board of Directors
In 2010, while serving as chairman of the board of trustees at the Pulmonary Hypertension Association (PHA), I wrote a piece for Pathlight that shared a little more about each of my colleagues on the board than what could be found on the website. I would like to do that now to give you a better idea about the extraordinary folks serving on our Team PHenomenal Hope (TPH) board, people who go above and beyond the call of duty. I’ll speak about each in no particular order, as they are all giants in this fight. Up front, I’m proud to highlight that we have all aspects of our pulmonary hypertension (PH) community represented on the board—patients, caregivers, medical professionals/investigators, and industry representatives.
Merle Jones is a patient who lives in northwestern Pennsylvania, near the Ohio border. A longtime support-group leader (one of the most important functions in our community), she has raised funds for research, acted as an effective advocate for our disease at the state and federal levels, and is both as tough as nails, yet vulnerable at the same time. Her love for her fellow patients is unequaled. She is a tireless pillar in our community and serves as TPH’s board secretary. I love Merle.
Bill Fairey is from the industry sector and has been a key member of our community since 2001. I state that unequivocally because during that period, he worked his way up to chief executive officer of one of the most important companies in the worldwide fight against pulmonary hypertension. Many of our patients, including my daughter, Meaghan, have taken medications developed by Actelion to be able to breathe, something we all simply take for granted. Along the way, any time the PH community needed anything, and I mean anything, to lessen the burden of our struggles, Bill and Actelion were there. Even though he’s retired from Actelion now, Bill is still there for us today as a highly valued member of our board. I deeply respect and admire him.
Patty George, M.D., is our board chair and founder of Team PHenomenal Hope. She and three other brave women competed in the 2014 Race Across America, the most grueling bike race in the world, and they did it for us and our PH community. Raising awareness and tens of thousands of dollars for our struggle, they road nonstop, day and night, over the mountains, across the plains, and through all weather conditions to cross the entire United States by bicycle in seven days. Wanting to continue the fight against PH (something she will never give up), she has led Team PHenomenal Hope to be the second-largest and fastest-growing patient advocacy organization in the country. With a vast international reach, TPH now has athletes and patients engaged around the world in this fight. Patty is a PH doctor who lives in Denver, and she defines the term “phenomenal” for us in the community through her leadership and dedication. Patty George is a giant in this fight, and her dedication to all of this is without parallel.
Ray Benza, M.D., hails from Pittsburgh and is also renowned and exceptionally highly regarded around the world as a clinician and investigator in the battle against PH. When I think of Ray, I think of a kind, understated PH professional who is a lion underneath. A few years back, he climbed the highest peak in Africa, along with fellow TPH athletes, Jessica Lazar and Bob Frantz, M.D., another great PH physician from Mayo Clinic, to raise awareness and funding for research on their “Path to a Cure.” Ray also was honored as PHA Physician of the Year and served on PHA’s Scientific Leadership Council. Perhaps most important to me, as the parent of a PH patient who ultimately required a transplant, Ray was instrumental in leveling the playing field with the United Network for Organ Sharing, so PH patients would also have a chance to receive organs through lifesaving transplants. Thank you, Ray, from the bottom of my heart.
Chris Walsh is from that very important side of industry that helps us to get our medications on time—specialty pharmacy. Our newest board member, she volunteered to help because of a deep personal commitment to our patients and their families. She has already completed several awareness and fundraising activities for TPH’s “Let Me Be Your Lungs” program, and in doing so, has taken the worldwide lead in fundraising for TPH’s programs for 2018. Joining her for a 10K event in Richmond, Virginia, last spring, I was astounded to see that she had engaged much of her family to come from places as far as Toledo, Ohio, to join her not as spectators, but as fellow racers and fundraisers. Chris is a beautiful person inside and out, and her heartfelt dedication to our loved ones fighting PH makes her even more beautiful to me, not to mention that we both grew up in Ohio only 60 miles apart. She is the best!
Hap Farber, M.D., rounds out this great group, and he absolutely defies description. He also is internationally recognized for his clinical and investigative work in the PH field. Hap is an amazing athlete who regularly competes and excels in 100 mile bicycle races, runs, and other extreme endurance events all the while being in his eighth decade! He is in his seventies and smokes other athletes in their thirties—all for us in the PH community. I will never forget first seeing the legendary Hap Farber ascend a stage at an international PH medical conference. He had long scraggly hair, circa late-1960s, and wore raggedy blue jeans with an untucked work shirt. He might have easily passed for a disheveled sanitation worker, no offense if that is what you do. Are you kidding me? In this venue of filled with people in suits and ties? Yet the moment he began to speak, hundreds of world-class PH physicians and researchers were fixated on his every word. This was due to his truly extraordinary reputation and length of service to our community. Hap is really something else, but the one thing about this guy that is irrefutable is he lives and breathes the fight against PH every minute of the day. He is my hero.
As members of our worldwide PH community, we are greatly blessed to have people of this depth and caliber dedicated to fighting this disease with and for us. They all volunteer for this, are not paid as board members of Team PHenomenal Hope, and they cover their own expenses. How they even find the time to do what they do for TPH always amazes me. They do this while giving unselfishly of their own time and resources because of their love for our PH PHamily. They are all great people that are fighting for a great cause, and I am humbled and deeply indebted to be alongside them in this struggle as they go above and beyond the call of duty for you.
Team PH Board of Directors, Treasurer