Stories of PH

Introducing the Pulmonary Hypertension Association (PHA)

August 13,2013

“Team PHenomenal Hope… Racing for PHA, Across the United States of America.” This past weekend we were delighted to participate in PHA’s launch of Race of Our Lives at the first Unity Miles event in our hometown of Pittsburgh. A lot of goodness that happened there, and so it seems like the perfect time to introduce and talk about our charity partner, the Pulmonary Hypertension Association (PHA).

So what is PHA? The Pulmonary Hypertension Association is an award-winning charity organization whose mission is to find ways to prevent and cure pulmonary hypertension, and to provide hope for the pulmonary hypertension community through support, education, research, advocacy and awareness. PHA creates patient support networks around the country to reach out to those  diagnosed with pulmonary hypertension (PH), providing key information and letting people know they are not alone. PHA educates health care professionals through online webinars, regional symposia and international conference, raising awareness of this disease so that providers think about this diagnosis when patients present with symptoms that may signal a need to think about PH. PHA advocates in Washington DC, rallying members to talk to their Congress members about the Pulmonary Hypertension Research and Diagnosis Act and related legislation. PHA raises money and funds research projects through several research grants, with the goal of one day finding a cure for this disease. In short, in its brief history and through tireless work, this organization has and continues to make a huge impact, helping numerous people worldwide.

Honestly, a better question than “What” is Who is PHA? 

The very character of the organization stems from its origin – created by and focused on patients. Composed of passionate individuals, PHA is dedicated to improving the lives of those living with PH. It was started in 1985, when there were less than 200 diagnosed with this disease. At that time, Dorothy Olson was also diagnosed.  Her exhaustive search for information in libraries didn’t satisfy her, so she set out to find others with PAH.  Her search led her to three other women in Florida, and the first PH support group was formed (Read about this incredible beginning here). Their compassion and sincere vision to help others with the disease led them to form the PHA (initially called the United Patient’s Association for Pulmonary Hypertension). In 1990 they mailed out the first Pathlight to all of the patients they knew, and started a support line staffed entirely by volunteers. They organized and brought on doctors who cared for patients with PH to help with medical guidance, and after the first clinical trials for a PAH-specific medical therapy (epoprostenol), held the first International Conference. In 1996 the community was hit hard when a diet drug was linked to the disease; the PHA responded by organizing the Second International Conference, seeking to impact medical education and raise awareness about PAH.

In the late 1990s, PHA was growing  rapidly; the founders realized the need to hire staff members to continue fueling its growth. In 1997 they brought on Rino Aldrighetti as the first staff member (the current President of PHA). Since then the organization has continued to grow into a community of well over 10,000 pulmonary hypertension patients, caregivers, family members and medical professionals.

Genuine Sincerity and Amazing Energy. One might think that the personal connections of the PHA to its membership could have been lost as a consequence of its immense growth spurt, but nothing could be further from the truth. In fact, the personal connections seemed to have grown stronger, fostered by the amazing leadership and teamwork – and energy -from its headquarters in Silver Spring, Maryland, to  support groups all across the country.

When you work with any of the staff members of PHA, you know that they always have the patient in mind and heart in their day-to-day work. PHA was founded by patients, is composed of patients, and the office truly works tirelessly to support people and groups all over the country. There is this passion and excitement that comes through their work, and we have experienced this warmth when we have talked to every person.

One product of their dedication and energy is the biennial International Conference. Every two years, members gather for scientific and medical talks, as well as breakout group roundtable discussions on major topics of interest to patients. What makes this conference different from other medical conferences is that doctors and researchers are attending with patients and nurses and caregivers and respiratory therapists – and all are asking questions and looking for answers. As Patty, the doctor on the team has said, “For a physician to attend a conference with people personally affected by this disease… well, it reminds you why you’re doing this, and that we really are all in this together.” From equipping individual patients with knowledge about PAH to connecting them with support groups, to advocating in Washington, educating healthcare professionals at regional conferences, funding researchers in their quests for new understanding of PAH, and bringing people together locally and at International Conference, PHA truly epitomizes an organization that works to improve patients’ lives and change the course of this disease.

When we started this journey, we stated that we were racing for PHA, and it is true that our training and racing over the past year and next year will be dedicated to this phenomenal organization and the PH community. And while we hope to inspire others to join us and raise awareness and funds for PH services and research, truth be told, it is our team who continues to be inspired by those for whom we ride. We know that we are all in the race of our lives, and rather than racing for PHA, we are honored to race with PHA knowing that together we will make a difference in this disease. Not only are we inspired by patients, but we are energized by working with our PHriends in Silver Spring, as our excitement grows.

Perhaps the vision is best summed up in the words of PHA President Rino Aldrighetti from the 2010 International Conference:

Anyone whose life is touched by PH has the right to fight back as much as health and interest allow.

Our job is to make that possible.

Our goal is to change the history of this disease.

PHA has – and continues to – do just that. We are truly proud to be in the Race of our Lives with PHA.