At first glance, the Pulmonary Hypertension Association (PHA) might seem different from the fledgling organization Pat Paton founded in 1991, along with her sister Judy Simpson and Teresa Knazik and Dorothy Olson.
This dedicated group of volunteers writing letters and making phone calls from their homes has become a modern version of the organization she envisioned. Today, the PHA staff and hundreds of volunteers nationwide are connected to an ever-growing community around the world — in person, by phone, mail and increasingly digitally.
In many ways, however, PHA remains the same grassroots organization formed at the now-legendary kitchen table meeting in the Florida home of Pat and her husband and co-founder, Jerry.
Pat, who died in July, was determined to help others after her own PH diagnosis. We are proud to continue her legacy of patient-to-patient sharing and service in all we do: from Conference to support groups and patient outreach, to sharing personal stories and raising awareness, to fundraising and research, and especially through our work to preserve patients’ health during the pandemic.
Always visionary and innovative, Pat and the other founders identified and created a list of researchers and PH-treating health care professionals and invited them to form a Scientific Advisory Board, which evolved into today’s PHA Scientific Leadership Council (SLC).
The SLC was instrumental in developing highly trusted and creditable patient resources that patients have come to rely on. It also was responsible for moving forward the concept of accredited Pulmonary Hypertension Care Centers (PHCC) that specialize in treating a once-barely known disease. Today, more than 1,300 people treated at 81 PHCCs participate in our PHA Registry, a national database of PH patients.
We also serve as the PH community’s voice in regulatory and legislative processes that determine insurance access and treatment safety. And most importantly, patients throughout the country benefit from improved diagnosis and treatment, thanks to PH-focused research.
Today’s modern, digitally connected PHA wouldn’t be possible without Pat, whose leadership style was deeply rooted in her feeling of hope. In the face of overwhelming odds, Pat, who was diagnosed with PH in 1987, believed that anyone could find a better self.
From the beginning, Pat worked to ensure PHA fulfilled the responsibilities outlined in its charter. She called or wrote to anyone with PH that she learned about. She tracked their locations with pins on a large U.S. map from her Florida home. When patients wanted to network, she respected their privacy and asked them to sign a release before sharing their names with other people with PH.
With incredible determination and compassion, Pat called the first 300 members of the organization, weaving them together into a strong organization. She once said, “It’s always important for us to remember we’re here to serve and to build a strong community rather than our own egos.” Within two years, the organization had grown large enough that she could no longer personally contact every member.
Originally from Indiana, Pat had been a nurse and later owned a Dairy Queen franchise near Indianapolis. She and her husband Jerry moved to Florida in 1990. She used her business skills to help the then all-volunteer PHA operate.
She also contributed to Pathlight, PHA’s quarterly magazine that continues to flourish today. Early issues featured practical advice for living with PH, including a “Tiny Tip from Pat.” Once, she shared how she always pushed a shopping cart around stores because she always had something to rest against.
Pat coordinated the association’s first Patient-to-Patient Telephone Support Line and many other PHA programs. She helped draft a list of PH-treating physicians for medical guidance and helped create information packets for newly diagnosed patients.
Her vision, business acumen and empathy equipped PHA to become what it is today. Nearly 30 years later, PHA continues to carry out the responsibilities Pat and the other founders laid out:
- Creating a robust and vibrant support network.
- Informing and educating people with PH and families about treatment, medication and research.
- Encouraging the formation of patient support groups led by PHA-trained volunteers.
- Maintaining and building contacts with PH-treating physicians to help ensure quality care.
- Encouraging and supporting PH research.
- Educating patients, families and the public about PH.
To inspire a new generation of leaders, PHA is honored to announce the Patricia “Pat” Paton Leadership Award.
This award is designed to honor and reflect Pat’s community-based leadership style. It also reflects her passion for rewarding acts that could strengthen PHA and the PH community. She believed that possibilities for many could emerge from the acts of one person. We hope that this award will reward and recognize the kinds of altruistic acts that characterized Pat’s selfless efforts on behalf of the community. I invite you to join me in donating to PHA’s Patricia “Pat” Paton Leadership Award.
I welcome your feedback about Pat’s significance in PHA’s success, as well as the leadership award named for her.
Brad A. Wong
PHA President & CEO