LISBON — Jeannette Morrill met Renee Brodeur shortly after Brodeur had been diagnosed with pulmonary hypertension. The young woman died two years later at age 26.

“She fought it so, so hard,” Morrill said. “We were in the hospital a couple times at Maine Med together. I remember even just before she passed away that she would come up and visit me, being in a wheelchair. She had gotten so thin, but she never, ever gave up hope. Never, ever.”

Morrill, who has lived with PH since 1976, founded UPHill Journeys in 2011 to raise awareness of the disease, to serve as a support group and so patients wouldn’t feel so alone.

This weekend, the second annual Renee’s 5K will raise money for the program to help people facing the costs of lung transplants.

Renee died in April 2012, a year after a double lung transplant that had been an effort to save her.

“It’s a really good organization,” said Madeleine Brodeur, Renee’s mother. “I really owe Jeannette and UPHill a lot. (The race) kind of gives back to the community. It gives people some hope. It can help them a little bit with the journey.”

The 5-kilometer run/walk and a 1-mile “PHun” Walk are scheduled for Sunday, May 4, at Lisbon Community School. Registration for the 5K is $20 in advance, $25 day-of. Registration will begin at 11 a.m. with the Phun Walk starting at 12:30 p.m. and the 5K starting at 1 p.m. Prizes will be awarded to top finishers.

Just shy of 100 people took part last year. Brodeur said she’s shooting for more this year. She’s also still looking for race sponsors.

Dr. Joel Wirth, the pulmonologist who diagnosed Renee, said pulmonary hypertension is marked by “abnormally high blood pressure in the blood vessels in the lung that lead to symptoms of exertional breathlessness, light-headedness, chest pain and eventually, if untreated, heart failure and death.”

It’s common in the late stages of heart and lung disease but much more rare, affecting only one in 100,000 people in Maine, when there’s no underlying condition, Wirth said. When it’s the latter, it’s also known as pulmonary arterial hypertension. The average age to be diagnosed is 50, and 80 percent of patients are women.

“It’s such an isolating thing, particularly in rural areas,” Morrill said. “When I was diagnosed in 1976, there were zero therapies. When I was diagnosed in 1976, I didn’t meet another PH patient for 20 years.”

There are now nine therapies to try, she said. Between support groups in Portland and Bangor, she knows about 20 patients.

Addressed early, it can be a treatable disease, said Wirth, who is medical director at the Maine Pulmonary Hypertension Program in Portland and director of the Division of Pulmonary and Critical Care Medicine at Maine Medical Center. As new medicines come along, lung transplants are starting to become more rare, he said.

Madeleine Brodeur said she wants her daughter remembered as someone who was sweet, kind and courageous. The mother hasn’t forgotten how much the community rallied around the family and came out to help.

“I’m just trying to pay it forward,” she said.

For race details and registration, visit www.runinarace.com/Renee/index.html.

kskelton@sunjournal.com

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