REMEMBERING PAT PATON

Today’s modern, digitally connected Pulmonary Hypertension Association (PHA) wouldn’t be possible without Pat Paton, who died in July 2020.

Pat saw the organization founded by four women around her kitchen table become the second largest rare disease association in the U.S. and inspire the founding and growth of more than 80 international partner associations.

“She was a determined person,” Judy Simpson says of her younger sister. “That’s why she survived as long as she did.”

Pat’s journey with pulmonary hypertension (PH) began in the late 1970s, about 10 years before her 1987 diagnosis. At the time, she and her husband Jerry were raising their daughter Julie and son Tom in Zionsville, Indiana, and operating two Dairy Queen restaurants.

In addition to PH, Pat had severe, painful osteoporosis. “Keeping herself occupied with PHA helped control the pain,” Judy says. “She was a fighter and a warrior.”

After her PH diagnosis, Pat and Jerry moved to Florida for warmer weather and sea-level altitude to ease her breathing. Pat’s desire to meet other people with PH eventually connected her with Teresa Knazik and Dorothy Olson, who also lived in Florida. When they decided to meet, Judy and her husband Ed flew to Florida to join them.

That 1991 gathering, known as the “kitchen table” meeting, set plans into motion for the United Patient’s Association for Pulmonary Hypertension, now PHA. “Pat’s part was so important,” Judy says. “She took on the responsibility of contacting every patient until the list got into the hundreds. She was the dynamic force behind all four of us.”

Before PHA had full-time employees, Pat set the groundwork for PHA’s growth, from the telephone support line to the regional coordinator program and so much more.

“Pat was the organizer, the person who stood out of the spotlight and did the roll-up-your-sleeves work of getting programs started and keeping them moving forward,” says Rino Aldrighetti, who was PHA’s first executive director, and first paid employee.

Greg Elliott, M.D., who met the founders in 1994 at the first PH International Conference in Georgia, remembers Pat for her humility, honesty and passion for helping others. “Pat felt she had been gifted. Even though she wouldn’t have chosen to have PH, she felt that was her purpose.”

Bruce Brundage, M.D., a Bend, Oregon, cardiologist who served on PHA’s Board of Trustees, said, “Pat had a vision for PHA, and I am so glad she lived to see it come to fruition.”

To honor Pat’s legacy, PHA established the Patricia “Pat” Paton Leadership Award to recognize PHA’s volunteer leaders. Learn more at PHAssociation.org/PatPaton.