Rare Daily Staff

A $15 million donation to the Brigham and Women’s Hospital is being used to created a first-of-its-kind research center to focus on primary sclerosing cholangitis, a rare, chronic bile duct disease.

Primary sclerosing cholangitis (PSC) mainly affects young men. It disrupts normal liver function and slowly causes cirrhosis and liver failure. The causes of PSC are unknown and the only treatment today is a liver transplant.

The $15 million gift is part of a $20 million donation from Barbara and Frank Resnek, who had a close family member diagnosed with PSC and were disheartened by the lack of treatment options and the uncertain future PSC patients faced. The Resneks initially pledged $5 million in 2017 after being inspired by the work of Joshua Korzenik, director of the Crohn’s and Colitis Center.

“We’re highly motivated to help the search for new therapies that could delay liver failure or need for a transplant,” says Frank Resnek. “And with normal funding channels falling short, we couldn’t sit back and wait for something to happen.”

The funding is being used to create the Resnek Family Center for PSC Research, which the hospital said is undertaking one of the world’s broadest efforts to find a treatment that prevents these life-threatening complications.

Korzenik is heading up the center’s clinical investigators and bench scientists. The team aims to improve understanding and diagnosis of PSC, build an expansive collection of tissue samples to analyze the disease, and identify existing treatments that could work for PSC. They will also focus on developing new therapies specifically for the disease and will share their findings with the broader medical community.

“We are operating with a sense of urgency, hope, and tremendous excitement about the momentum we can create,” said Korzenik.

Korzenik says one crucial lead is the link between PSC and ulcerative colitis—up to 80 percent of patients with PSC have this form of inflammatory bowel disease. This avenue of study will help understand the cause of PSC and may also benefit patients with ulcerative colitis.

“Thanks to the Resneks’ incredible generosity, we can accelerate the timeline for these breakthroughs to come in the next years—not decades,” he said.

Photograph: Resnek Family Center for PSC Research’s Joshua Korzenik with research team member Matthew Hamilton

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