Pat Paton: Visionary for Patients

Pat Paton: A Visionary for Patients

Patricia Rae Berg appeared a bit shy when she was growing up in Logansport, Indiana, but by high school, she already showed the leadership qualities that set her apart.

“She was a determined person,” Judy Simpson says of Pat Paton, her 15-month younger sibling with whom she founded what became the Pulmonary Hypertension Association (PHA). “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 her husband Jerry were raising their daughter Julie and son Mike in Zionsville, Indiana, an affluent Indianapolis suburb. Pat left her nursing career to manage two Dairy Queen restaurants that had been in Jerry’s family.

They supported the high school students who worked for them with college scholarships. They participated in civic and community organizations.

Pat was known for her innovative approach. When Dairy Queen sent franchisees whole candy bars to break up and mix with ice cream to make Blizzards, Pat triple-wrapped the chocolate in plastic and drove her car over them to break them more easily.

“She ran everything in Zionsville,” Judy says. “When she and Jerry moved to Florida, she ran everything there, too. Wherever she went, she took charge.”

A new challenge

Cardiologist Michael McGoon, M.D., met Pat and Jerry when they came to Mayo Clinic in Minnesota after Pat’s diagnosis. Pat was stunned and understandably fearful, Dr. McGoon recalls. “There was no question that the diagnosis was correct and her degree of PH was severe.”

But Pat and her family didn’t see her six-month to two-year prognosis as “an immutable act of fate.” They saw it as a challenge to be addressed head-on.

Judy recalls one of Pat’s questions for the Mayo Clinic doctors. She asked what it would be like if she died of PH. When they told her she probably would die from right heart failure, she didn’t want to drive any more. She was afraid she might injure someone if her heart gave out.

But after 18 months, Judy’s husband, Ed Simpson, asked Pat, “When are you going to start thinking about living, not dying?”

Standing out

In those early visits to Mayo, Pat and Dr. McGoon developed what would become a lifetime friendship.

A new challenge

Standing out

Pat and Dorothy

“She would emphasize her wishes and intentions by jabbing her finger at me, often tapping my chest,” Dr. McGoon says. “This gesture became a mainstay of our conversations for decades. It unquestionably made a lot of decision-making relatively easy.

“I remember once at some event, probably a PHA Conference. The speaker asked Pat to stand from her place in the audience to be recognized, and the petite but feisty lady hollered out, ‘I already am!’ ”

The early years also marked Pat’s desire to meet other people with PH. It took two years to find one – a friend of one of Judy’s nursing students. They met in DeKalb, Illinois, at Judy and Ed Simpson’s house.

Judy, Ed and Jerry could see how important the meeting was to Pat. She had found a kindred spirit.

Dynamic force

When Pat and Jerry moved to Florida for warmer weather and sea-level altitude to ease her breathing, she kept looking for other people with PH. After someone referred her to Teresa Knazik and Dorothy Olson, they decided to meet. Judy and 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 (UPAPH), 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 of us.”

Judy describes Pat as smart, sympathetic and empathetic. “But she knew how to push your buttons to make you move,” Judy says.

Pat saw the organization founded by four women around her kitchen table grow to become one of the largest rare disease associations in the U.S. and inspire the founding and growth of more than 80 international partner associations, says Rino Aldrighetti, who was hired as PHA’s first professional, part-time employee in 1999 and became its full-time executive director in 2001.

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

Setting the groundwork for growth

Rino says many nonprofits ultimately fail because the founders have a hard time opening the door to new leaders. Thanks to Pat and Judy, that wasn’t the case when Rino came to PHA.

“Pat said to me, ‘Always find ways to involve more people. We are a family, a community, and everyone has a right to lead or follow, as they choose.’ ”

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

Dynamic force ‘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.’

— Rino Aldrighetti

Setting the groundwork for growth

the spotlight and did the roll-up-your-sleeves work of getting programs started and keeping them moving forward,” Rino says, describing her as the “quiet one” among PHA’s early leaders.

“That’s not to say she didn’t have clearly voiced and sometimes fierce opinions,” he says.

Passion for patients

Greg Elliott, M.D., and Dr. Brundage, remember meeting the Patons, Simpsons and other founders in 1994 at the first PH International Conference in Stone Mountain, Georgia.

Dr. Elliott was gathering DNA samples from people with what was then known as primary pulmonary hypertension (PPH), in what became the first Research Room.

“When we arrived at Stone Mountain, it was a complete joy to meet the Patons and the Simpsons. They were just as gracious as can be, and they remained that way every time we were together,” recalls Dr. Elliott, medical director, graduate medical education, Intermountain Healthcare, Utah, and an emeritus member of the PHA Board of Trustees. “I will always remember Pat fondly for her humility, honesty and passion for helping others.”

That was evident after Conference in 2006, Rino recalls. The board was feeling good when it met afterward. Attendance had taken a large jump. For the first time, Conference had included a full scientific program for medical professionals. PHA had secured sponsorship for the Scientific Sessions from the National Heart, Lung and Blood Institute, Centers for Disease Control and Prevention and the Office of Rare Diseases.

PHA also had granted about $50,000 in patient scholarships, which the board believed to be the largest among health nonprofits.

Before they could celebrate, Rino said Pat reminded them: “This Conference was great for all who could afford to come. Our job is to think about those who couldn’t. We have to expand the scholarship program a lot.”

Pat’s quiet challenge made all the difference, he says. By the next Conference, PHA had quadrupled the scholarship fund to $200,000. “While she never sought credit, Pat’s focus on patients made all the difference,” Rino says.

Building a legacy

Conference was exhausting for Pat, but she loved what she was doing, Judy says. “Pat felt she had been gifted. Even though she wouldn’t have chosen to have PH, she felt that was her purpose.”

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

Dr. Brundage got to know Pat and Jerry well when he served on the board. He considers Pat, Jerry, Judy and Ed the four cornerstones of PHA.

“Unfailingly, they were at every meeting — board, committee or biennial — always leading and always contributing,” Dr. Brundage says. “They were family, and they made you part of the family too.’

He describes Pat as a person of few words. “But when she spoke, you had better listen because it was going to be meaningful.”

Passion for patients

Building a legacy

Pat Paton Leadership Award

To honor Pat’s legacy, PHA established the Patricia “Pat” Paton Leadership Award, which recognizes Pat’s community-based leadership style and her belief that “from the actions of one emerge possibilities for many.” To donate toward the award, which will recognize PHA’s volunteer leaders, visit PHAssociation.org/PatPaton.