A Message from the new Director of Team PHenomenal Hope
The 2016 PH Association International Bi-Annual Conference & Medical Sessions exhibit was held mid-June in Dallas, Texas. The conference was a celebration of the lives of those living with pulmonary hypertension and their caregivers, and it was a celebration of the profound impact outgoing PHA President and CEO Rino Aldrighetti, has had over his 17 years of service to the PH community.
As the new Executive Director of Team PHenomenal Hope, this event was a comprehensive welcome for me to the special family created by pulmonary hypertension, including its patients, caregivers, physicians, pharmaceutical representatives, research scientists, general wellness advocates, and a wide range of related industry supporters and professionals.
The community opened its arms with a happy smile and wide embrace. And, to my glad surprise, I was traveling with a rock star – Dr. Patricia George, founder and ongoing President of Team PH. I think people actually asked her for autographs at one point. Our conference booth was overwhelmed with patients and industry advocates who warmly engaged & encouraged us, expressed interest in joining, or just stopped by to thank Patty and Team PH for all the miles they trek.
Jessica (Team PH athlete and PH Clinic Nurse), Patty, and I were truly touched and affected by the joy, life, and vibrance of the patient community. I couldn’t be more grateful for the opportunity and honor to work with such a unique group of people.
Often, I was asked what my connection to pulmonary hypertension was.
Are you a patient? No.
Is a relative of yours a patient? No.
Are you an athlete on Team PHenomenal Hope? Nope.
Are you a pulmonologist? No way.
So, why are you here?
At first, this caught me off guard. What was I doing there in Dallas? How could I justify my participation in this amazing and ruckus party? Who invited me, anyway?
Those who were asking didn’t need an answer. They really just wanted to welcome me, and knowing my connection was a simple way to let them do that.
But, after all, why would I take on the challenge of growing an organization that I had little connection with? I was just the Team PH web developer! Well, I’ve met the athletes. They are great. I’ve known Patty for almost a decade. Superstar, without question. Jessica, the PH Clinic Nurse, is amazing.
As much as I look forward to working with all of them, truth be told, it’s really about someone I did not meet – someone who I will never get the chance to meet.
Her name is Philippa. Or was. Philippa was a young woman in her early twenties living in New Zealand when she noticed chest pain. We’ve all been there. But, turns out, her pain was diagnosed as pulmonary hypertension. She received a liver transplant. She was listed for a lung transplant. On oxygen all day, every day.
When Team PHenomenal Hope committed to race The Pioneer in New Zealand in January of this year, it was an obvious goal to check in with Philippa and visit awhile. However, Philippa passed away the day before the team touched down.
The team raced. They breathed. They gasped and struggled over the 15,000 vertical meters they climbed on their cycles. Back home, in the US, I wept.
You see, I built the Team PHenomenal Hope website. I posted all the stories and photos. For those of you who share with us, I know you. I know your faces, the pictures of you with your loved ones, your kids, your friends. And when you die or struggle with your disease, I am shocked. I am shocked perhaps at a medical system that failed you by being too late to a diagnosis, perhaps at a government policy in your home country that restricted your access to medicines we know can improve your quality of life – or save it. I am shocked that more could not be done to save a life. To save Philippa.
On our first day in Dallas, I was sitting with a patient, a young woman, after she had shared her story about living with pulmonary hypertension. She looked me in the eye, hers welling with tears, and asked, “when will you find a cure for me?”
I gave her a hug whispering, “Soon, I hope.” And a moment later I told Jess that I wasn’t cut out for this job. Crying every day wasn’t in the description!
My goal, as the Executive Director of Team PHenomenal Hope, is to raise an incredible amount of money that we will use to directly fund research scientists who are working on cures and treatments, and to fund direct costs incurred by patients and their families as they seek care. I have a team of amazing endurance athletes who stand alongside me, and they will race across this earth so that we can find a cure and treatment for pulmonary hypertension.
And that is why I am here. For Philippa. For the young woman in Dallas. And for you. To help find a cure, faster.
I look forward to getting to work, to meeting and sharing the joy of life with you at PH Support Groups, on social media, and at conference in 2018.
Thank you for the humble privilege of serving in this capacity.