Why Giving Matters: Gaining Insight Into Vision Loss

As virtually anyone who has suffered vision loss can attest, the condition can be life-altering and frightening, potentially affecting one’s mobility, independence, security, and quality of life. And when that vision loss occurs suddenly and without warning, it can be downright terrifying.

Just ask Duke Rohlen. Diagnosed with a condition called non-arteritic anterior ischemic optic neuropathy, or NAION, four years ago, the Bay Area industry leader’s medical journey began when he woke one day with sudden and dramatic visual impairment. As he relates in a moving essay, Duke faced the prospect of having to transition from an active, healthy life to one that was irretrievably affected by vision loss and perhaps even blindness.

Luckily, however, Duke was able to quickly meet with a team of specialists at the Byers Eye Institute at Stanford after his diagnosis. Joyce Liao, MD, PhD, professor of ophthalmology and of neurology and director of neuro-ophthalmology, and Shannon Beres, MD, clinical associate professor of neurology and clinical assistant professor of ophthalmology, were able to quickly and accurately assess Duke’s condition and help stop the progression of his disease. Dr. Liao and her lab have been conducting pioneering research into this and other optic nerve conditions for several years, which allowed him to receive the best possible care.

Today, Duke is happy to report that after receiving comprehensive, expert care at Stanford, he has had a positive outcome and is leading a rich, meaningful life. He remains forever grateful to Dr. Liao and her team and has made a generous donation to the Byers Eye Institute to further research into NAION.   

“I have had the extraordinarily good fortune to have been cared for at the Byers Eye Institute at Stanford,” Duke says. “The cutting-edge doctors, staff, and technology are collectively pushing the boundaries of advanced eye care. My wife, Kendall, and I are honored to financially support this team and their scientific initiatives.” 

Research Into a Rare Disease

NAION affects approximately 10 out of every 100,000 people over the age of 50. The condition is analogous to an optic-nerve stroke—one that affects the information highway that connects the eye and the brain. It is caused by a loss of blood supply, and therefore oxygen delivery, to the highly metabolically active optic nerve. While NAION typically occurs in one eye, the second eye has about a 15 percent chance of developing the same problem.

“The eye acts as the camera that captures the information and the brain processes that information,” Dr. Liao explains. “So, when you lose oxygen in this information highway, you disconnect the two parts of the visual system, thereby leading to vision loss or visual dysfunction.”

There are very few specialists with the knowledge and expertise to treat NAION. In fact, the Byers Eye Institute is the only center west of the Mississippi that is conducting the research vital to studying, and hopefully one day curing, this devastating disease.

“We need to make dramatic progress in escalating our pace of discovery to help patients suffering from this terrible disease, and the way we can do that is through philanthropy. We’re so thankful to donors like Duke.”

— Joyce Liao, MD, PhD    

The research Dr. Liao and her team are conducting is wide-ranging and comprehensive. In addition to studying the role of genetics and environment on NAION, they are engaged in advanced eye imaging, as well as analysis of plasma proteins, metabolic processes, and mitochondrial function in skin fibroblasts to gain an extremely detailed profile of factors that may be involved in the disease. They are also testing hyperbaric oxygen therapy in patients with acute NAION, in which oxygen is delivered directly to the injured tissue where the blood vessels are compromised. Patients are assessed before and after treatment to better understand the key retinal changes that occur following treatment.

Since NAION is sometimes observed as a consequence of high-altitude exposure, such as during travel on commercial airlines or skiing in the mountains, Dr. Liao’s team is using an animal model of systemic hypoxia to better understand the key changes in the optic nerve and retina following such activities and how best to promote functional recovery. In addition, to understand why some patients develop NAION in only one eye while others unfortunately progress to optic-nerve stroke in both eyes, Dr. Liao’s team is generating retinal neurons using stem cells taken from the skin of NAION patients and studying these cells in a petri dish in the lab.

Of course, all of this work requires funding. “There is no foundation supporting research into this disease, and funding from the National Institutes of Health can never be enough,” Dr. Liao says. “It’s reasonable to say that without the generous support of our patients and our supporters, this research would not be possible.

“We need to make dramatic progress in escalating our pace of discovery to help patients suffering from this terrible disease,” she adds, “and the way we can do that is through philanthropy. We’re so thankful to donors like Duke.”

NAION Treatment at Stanford

Although there is currently no cure and no standard proven treatment for NAION, Dr. Liao and her team have made important strides in researching the disease and helping to stop its progression, and even achieving some visual recovery in some patients. While treatment is individualized according to a patient’s risk factors, interventions might include a combination of medications (typically drugs that have been approved by the U.S. Food and Drug Administration for use in other conditions), treatment in a hyperbaric chamber, and perhaps surgery to correct risk factors that lead to systemic hypoxia. Patient-derived stem cells can also be developed for use in novel, regenerative therapy—the ultimate precision medicine for the treatment of NAION.

“We do absolutely everything we can for every patient,” Dr. Liao says. “We check off every single box we can. And because of the research we’re conducting, we can check off more boxes than anyone else in the world right now.”

Beyond the clinical side of care, Dr. Liao and her team also focus on the psychological and emotional aspect of treatment. “Obviously it is important for patients to continue to try to lead the lives they want to live,” Dr. Liao says. “As we understand more about this disease, we can better counsel patients about what they can do. But above all, they should continue to do the things they really love.”

That’s just what Duke Rohlen is doing.

You, too, can make a difference by supporting NAION Research. Please click on the button below, then under "Direct your gift," choose "Other Designation" and enter "NAION Research – Ophthalmology Department" in the field. Thank you for your support!

To learn more about NAION research and how you can support this work, contact Melanie Erasmus.