A pulmonary hypertension patient found care and concern from a Pitt doctor. Now, his family is raising research funds in his honor.

A road trip to see a hockey game was the unexpected start of a nearly three-year health battle — and ultimately the heartbreaking loss of a vibrant young son. Now, Brent Michael Schnake’s family is making a deliberate effort to turn their loss into hope for others with the same condition by funding research into pulmonary hypertension.

Born in 1995 to Mike and Amy Schnake of Springfield, Missouri, Brent was diagnosed at birth with an enlarged heart and a liver shunt, an abnormal blood vessel that affects the body’s ability to clear toxins from the blood. From the start, Brent was closely monitored by heart and liver specialists. Over time, he was also treated for scoliosis and was referred to a pulmonologist for minor breathing issues, for which he received inhalers as treatment. But the issues didn’t seem to be related, and they didn’t stop Brent from living a full life.

But in 2022, Brent — who now lived in Uniontown, Pennsylvania, with his fiancée, Nikki Glover, and their beloved dogs — returned home to Missouri to celebrate his brother’s birthday at a St. Louis Blues game. The next morning, Brent couldn’t get out of his hotel bed, couldn’t breathe normally, couldn’t stand up. His family called 911, and he was taken to Barnes-Jewish Hospital, where he received a pulmonary hypertension (PH) diagnosis.

“Amy and I asked, ‘OK, what's the plan for Brent to get better?’ We were told there is no cure, but there are medications available that may help improve his symptoms and slow progression of the disease,” said Mike Schnake.

PH is a type of high blood pressure in the lungs caused by thickening and narrowing of the small arteries in the lungs. The condition forces the heart to work harder to pump blood, ultimately leading to heart failure. Many things can cause PH, but in Brent’s case and many others, the cause is unknown.

The Barnes-Jewish team began treating Brent to slow progression of the disease and keep him as comfortable as possible, but they knew he needed care closer to home in Pennsylvania. “They said, ‘You're really in luck, because one of the major research centers on that disease is in Pittsburgh,’” Mike explained. That’s when the Schnake family met Stephen Chan, professor of medicine, the Vitalant Chair in Vascular Medicine and director of the Vascular Medicine Institute at the University of Pittsburgh School of Medicine.

In addition to treating patients with PH, Chan conducts research into the molecular underpinnings of the disease. He and his lab have been searching for more effective therapies for more than 20 years. Over the past decade, their work has generated evidence that in PH, the diseased blood vessels in the lungs are hungry for an amino acid called glutamine, which, when converted to glutamate, is a key driver of the disease.

“The unmet patient need in PH is immense, particularly for the most prevalent forms of this disease, where we have few effective therapies,” Chan said. “In Brent’s case, even the newest and most cutting-edge treatments were not enough to reverse the progression of his disease.”

Chan treated Brent, and supported his family, for almost three years. Mike and Amy recalled Chan’s care and concern for Brent as well as his responsiveness, as he always answered the family’s email and text messages within a few minutes.

“It was excruciating as parents to watch our son struggle so hard to simply breathe,” Mike said. “When Brent received his PH diagnosis, Amy and I told him that he would not walk the PH journey by himself. We traveled from Missouri to be with him for every single appointment in Pittsburgh, so we really got to know Pittsburgh and Dr. Chan and the team very well. Even though it was an impossible task, Dr. Chan and his team tried different medication approaches and were always honest about what Brent and we were facing.”

To honor their son and turn their family’s grief into hope for others, Mike and Amy have established the Brent Michael Schnake Research and Innovation in Pulmonary Hypertension Fund, which will support PH research at the Vascular Medicine Institute. With that support, Chan’s research program is launching a one-of-a-kind clinical trial to test whether inhibiting glutamine conversion can stop the disease in its tracks and halt the progression of this deadly condition.

“Brent was all about trying to make things better for everybody else. He never complained. He never asked, ‘Why me?’ He was so courageous through the whole thing. And he just took things as they came, he just kept battling and battling,” his parents remembered. “He had goals in his life he wanted to accomplish. He wanted to get married. He hoped to have kids one day. He was always positive, full of fun, his smile was infectious, and his laugh.”

“I told him all the time that he was my hero and that his mom and I were so proud of his example of courage and so thankful that God had given him to us to be his parents,” Mike said.

Brent died on Dec. 26, 2024, at the age of 29. Though the Schnake family will never have concrete answers as to what led to his condition and his passing too soon, they do have a concrete way to honor him — and perhaps to help others with PH achieve better outcomes in the future.

“Even in the face of dark, dark times, you can be positive. Brent just had a sense of peace about him,” Mike said. “Brent loved and trusted God. When he passed, we found two Bible verses in his wallet … both messages of hope. We can’t bring Brent back, but we can possibly help others with our gift.”

Chan reflected on the gift and its potential: “The next decade of work in our field holds great promise for our patients. It is my hope that our endeavors — now supported by the Schnake fund — will honor Brent’s legacy and allow us together to bring hope to the many families facing this condition.”

Make a contribution to the Brent Michael Schnake Research and Innovation in Pulmonary Hypertension Fund.

Photography courtesy of the Schnake family