Greg Porta

When Greg Porta’s son Alex was born in 1994, the physicians noted that the infant had an unidentified lung disease and would spend the first five years of his life on oxygen.

“We asked, ‘What can we do? What is going on?’ But no one could tell us,” says Mr. Porta, chair of the American Thoracic Society Public Advisory Roundtable (ATS PAR), which advocates patient-centered care and public awareness. “That was one of the hardest parts—just not having answers.”

Mr. Porta is a founder and board treasurer of the Children’s Interstitial and Diffuse Lung Disease Foundation, a nonprofit he helped start in 2004 to advance research and patient care around chILD. He fills this demanding role outside of his full-time career as a code enforcement officer for a township near Cincinnati.

In 1999, Alex had a double lung transplant. Although his quality of life then improved, not long after, his body began to reject the new lungs. At age 7, Alex passed away.

Two years later, Greg and his wife, Diane, along with four other families with children who had serious lung disorders, were invited to attend the first Rare Lung Disease Consortium. During the meeting on pediatric interstitial lung disease, the families were asked to share their experiences. At the end of the conference, the parent group was asked if they would start a foundation. All said yes.

Robin Deterding, MD, director of the Breathing Institute at Children’s Hospital Colorado, professor of pulmonary medicine in the department of pediatrics at the University of Colorado School of Medicine, and chair of the North American Children’s Interstitial and Diffuse Lung Disease Research Network (CHILDRN), asked Mr. Porta to help lead the foundation.

“He had insights, he was passionate, and he knew what it felt like to have to deal with the unknown and lose a child,” says Dr. Deterding, chair of the ATS Assembly on Pediatrics. “He wanted not only to help others going through the same experience, he wanted to help find answers, so these diseases were identified.”

Mr. Porta finds that a major source of inspiration comes from seeing the kids at the chILD Foundation’s annual conferences. Since they began in 2004, attendance has grown from about 20 families to more than 100 families.

“I’ve seen kids come to the conference year after year, and they’ve made friends for life,” Mr. Porta says. “Siblings come too and can talk to other siblings. We split into different disease states, so they can talk about what they are going through and how to get through it.”

Today, because of the chILD Foundation, there are also many more answers to questions parents ask, and at least 12 new diseases have been identified, including Alex’s, which was ABCA3. The chILD Foundation has recently set a goal to find a cure for one disease within the next five years.

Before taking on the role of board treasurer for the foundation, Mr. Porta served as board chairman until late 2014.

“Greg and his family have dedicated countless hours over the years for chILD,” says Ann Gettys, executive director for chILD. “He was one of the original founders and served as our foundation president for the first several years. Without his dedication, chILD would still be a group of undefined lung disorders and our organization would not exist,”

In 2006, Greg got involved with the ATS PAR. Sue Byrnes of the LAM Foundation, who had been a part of the PAR from its inception, introduced him to the activities of ATS and the importance of being part of an organization that valued the patient’s prospective.

“ATS values us and our opinions—it is gratifying to me that ATS gives so much importance to the patient voice,” Mr. Porta says. “With support from the ATS, we have been able to advance the quality of life and help answer questions for our patients.”

Another way he sees ATS support is through its members. Mr. Porta says each year during the ATS International Conference, as many as 200-250 patients and physicians will attend a session called “Meet the Experts” where ATS members and volunteers will meet with patients and patient families to discuss the latest in their pulmonary diseases one-on-one.

The chILD Foundation also has teamed with the ATS Foundation on several research grants, and together they have awarded $280,000 in research for chILD.  Through matching grants, the ATS Foundation enables small rare lung disease organizations such as chILD to fund research that otherwise would not be possible.

Outside of work, and his service with ATS and the chILD Foundation, Mr. Porta and his wife, Diane, enjoy hiking, camping, and spending time with their two grown children, Justin and Emily.