By Josh Friesen
There’s a river in southern Montana — the West Fork of the Stillwater — that spills down from the Beartooth Mountains and cuts across the rugged prairie landscape.
It’s one of Joe Whittinghill’s favorite places. Late last September as summer yielded to autumn, he stood in the shallow stream, and he paused. He looked at the fly fishing rod in his hand. He saw the rocks beneath the rippling current. He gazed up and down the meandering river, at and through the layers of cottonwood trees, and beyond toward the alpine.
“I thought, ‘Boy, it would really be a sad day if I wasn’t able to see this,’” Whittinghill said.
It was 10 years prior, in 2015, when Whittinghill began experiencing worrying symptoms with his sight. By 2016, his peripheral vision and night vision had been almost entirely compromised. Had it not been for the OHSU Casey Eye Institute, a rare autoimmune eye disease would have stripped Whittinghill entirely of his ability to see. His experience at OHSU inspired his establishment of a one-year fellowship in Ophthalmic Genetics, which will help support the next generation of physicians training at OHSU and the Casey Eye Institute.
“If I had not ended up at OHSU, I would’ve lost my eyesight,” Whittinghill said. “One of the reasons we’re funding this fellowship is to allow the team to work on genetic autoimmune-related and cancer-related eye diseases so that others will benefit.”
Whittinghill’s health journey began in Seattle, where he resides. When his symptoms started, he first saw a few local physicians before being referred to eye specialists at the University of Washington. Despite several ocular and genetic tests, no one could pinpoint the cause behind Whittinghill’s progressive eyesight loss.
“If not for these specialists in Seattle going above and beyond and helping me get referred to the next group of people, I probably would’ve lost my eyesight,” Whittinghill said. “They said, ‘We’ve got to figure out what’s causing this,’ and that’s when I was referred to Dr. Mark Pennesi and the genetics department at OHSU.”
Mark Pennesi, M.D., Ph.D., is a professor of ophthalmology at the OHSU School of Medicine and an expert in degenerative retinal disorders. Soon after Whittinghill arrived at OHSU, he also met with Paul Yang, M.D., Ph.D., chief of the Paul H. Casey Ophthalmic Genetics Division and the Martha and Eddie Peterson Endowed Professor at the Casey Eye Institute. Initially, they, too, were stumped by the mysterious malady that was threatening Whittinghill’s vision. Together, though, the two physicians were able to come to a definitive — albeit rare — diagnosis.
Whittinghill had non-paraneoplastic autoimmune retinopathy (npAIR), a rare autoimmune disease in which the body’s immune system produces antibodies that target the eye’s retina and retinal photoreceptor processes.
“I was just so impressed to see this standard of care. There is a need for more volume, being able to see more people, to help advance the research that’s going on at OHSU.”
Joe Whittinghill
Whittinghill had a diagnosis, and when he learned Yang was one of the few physicians in the country studying npAIR, he was struck by the chain of events that led to it.
“I still have that email from Dr. Yang with this breakthrough that we have a diagnosis,” Whittinghill said. “He’s one of the few people studying this, which is pretty stunning. All these doctors taking extra steps to find someone who has seen this after you keep hearing that none of your tests are coming back conclusive and that we’re really having a tough time finding a diagnosis, it was a big deal.”
Whittinghill began treatment with intravenous immunoglobulin, which helped protect the retinal proteins from his immune system. After a while, Rituximab, an antibody medication, was added to his treatment plan. Between the two, his vision loss has stopped progressing and is now stable.
Reflecting on his experience at OHSU, Whittinghill recalls the fellows in both Pennesi and Yang’s groups. The thought of helping train the next generation of physicians who can push genetic ophthalmology forward inspired him to give back.
“The fellows added so much value to my experience over the course of my time,” he said. “They were picking up on things and adding to discussions and problem solving, looking through treatment options and test results right alongside the doctors. I was just so impressed to see this standard of care. There is a need for more volume, being able to see more people, to help advance the research that’s going on at OHSU.”
The fellowship in Ophthalmic Genetics that Whittinghill established adds to the Casey Eye Institute’s legacy of philanthropy making a difference in the future of health care. His vision was saved in part because of the foundation of care that philanthropy has built. Adding to it, Whittinghill says, felt significant.
“It feels exciting to be a part of participating with others who saw the need and stepped up to do something,” he said. “So much of the excellence and the breadth of the care that’s happening has been in part funded through private support. When you go to Casey Eye, you can feel how important private support has been to that institute.”
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