The Pulmonary Hypertension Association’s motto is Empowered by hope, a brief summation that speaks volumes. It says that, while they do indeed help thousands of patients with Pulmonary Hypertension, thereby making them powerful, they are fueled by the hope that their patients exude. It is their patient community that motivates them to do what they’ve done for more than 20 years. Hope, through help.
PHA’s mission is to find methods to prevent and cure Pulmonary Hypertension (PH), and to also provide for the PH community through support, education, advocacy and awareness. An arduous undertaking, considering that there are currently upwards of 30,000 Americans living with PH today.
Our community is a huge tent for anyone affected by the disease.
Soon after Dorothy Olson was diagnosed with PH and given two years to live, she was discouraged yet determined. Inspiration paved way. She was connected with Teresa Knazik, a fellow PH patient. Letters were written, pen-pal groups were formed – an organization was shaped. And soon after Olson, Knazik, Pat Paton and Judy Simpson sat around a Florida kitchen table to share everything they knew about PH, the Pulmonary Hypertension Association was born.
“From our earliest days, PHA has provided opportunities for support and connection, patient (and now medical) education, and integration of medical professionals into our organization,” said Debbie Castro, Volunteer Service Director for the Pulmonary Hypertension Association, and Adrienne Dern, PHA Vice President.
What makes PHA so innovative, Castro and Dern said, is their ability to connect patients with caregivers and medical professionals alike. PHA currently hosts more than 235 support groups across the country, bringing people together to support a shared cause.
“Our community is a huge tent for anyone affected by the disease,” Castro and Dern said. “[PHA] creates a strategic alliance between the families affected by the disease and the medical professionals who treat them.”
Although PHA started out as a single support group, the internet has allowed them to broaden their scope. In addition to increasing the amount of services to its core constituencies, PHA has implanted a number of online communities to help them reach more people.
“We have numerous online communities,” Castro and Dern said. “Including e-mail groups, a message board, daily online chats, and our latest offering – PH E-mail Mentors, which enable patients and caregivers to find someone like themselves and engage in a one-on-one e-mail relationship.”
In 2009, PHA moved away from its “one size fits all” programming and developed targeted programs for specific patient groups, a shift that PHA said has significantly enhanced what they can offer to their patients.
Today, PHA, at the helm of President and CEO Rino Aldrighetti, prides themselves on bringing people together. Whether it’s through an online chat or a kitchen table discussion, PHA, as their website states, turns strangers into friends.
“We have stayed true to our roots,” Castro and Dern said. “[We’ve] continued – but not altered – the vision and ingenuity of our founders. Just as they did then, we work every day to end isolation and seek a cure for Pulmonary Hypertension. So while the scale and scope have greatly expanded, we continue to follow their lead.”