The Emotional Meeting of an Eye Tissue Donor’s Family and Researchers

August 17, 2017 7:00 AM

Tim Anegon’s wife and daughter recently connected with the U-M scientists working with his eye tissue donation — and saw the gift’s outsize impact.

When Tim Anegon became an eye tissue donor after his death in 2014, it wasn’t just one person he would touch with his eyes — it was millions.

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His family recently got to see that impact in action when they visited the lab of Patrice E. Fort, Ph.D., the University of Michigan researcher whose team is putting Anegon’s cells to good use. They got there with the help of the nonprofit group Eversight Michigan, which focuses on restoring sight and preventing blindness. Eversight is also connecting families of eye tissue donors with researchers working to cure eye diseases.

The family visited with Fort at the U-M Kellogg Eye Center. There, they saw how Anegon’s tissue and cells are an invaluable tool in the fight against diabetic eye disease.

“In research, we start with animal models and cell models, but those have limitations,” says Fort, a research assistant professor in ophthalmology and visual sciences. “If we want to understand how diabetes affects the human retina, we will find the most meaningful answers with human tissue from eye donation.”

Today, more than 32 million people worldwide are blind and 200 million others have moderate to severe visual impairment, according to Eversight.

Eye donation has fueled major advances in understanding blinding diseases such as glaucoma and age-related macular degeneration. But researchers face a shortage of human eye tissue as the number of eyes donated for research continues to decline, according to a recent paper in JAMA Ophthalmology.

Donating hope

Through organ and tissue donation, families donate for a chance at cures or a new life for recipients. In Tim Anegon’s case, he was on both sides of the process.

When Anegon, of Saginaw, Michigan, received a liver transplant, his family understood it was only possible because a donor gave the gift of life. Anegon died of complications after the transplant, and his family decided to be an organ donor family.

SEE ALSO: One Patient Sees a Corneal Transplant’s Transformative Effect

“He was 50 when he got sick. He had just turned 54 when he passed,” says his wife, Coleen Anegon. “He lived a lot of life in those 54 years. He lived well and loved his children.”

Meeting with researchers helped his family continue his story.

“Donating his cornea and eye tissue seemed so insignificant compared to an organ,” says daughter Courtney Anegon. “But we realized from the researchers today that improving someone’s quality of life is huge, in ways that we can’t even begin to understand.”

From donation to vision research

Fort says many people diagnosed with diabetes will experience retinal issues during the course of their disease, which causes varying degrees of vision loss.

“They start losing vision at some point, to some degree,” he says. “For some of them it’s going to be complete blindness, for others it’s going to be a little bit more subtle, but all of them virtually will have problems with their vision.”

At Kellogg, a repository of eye tissue that includes Anegon’s is being developed to investigate aspects of diabetic retinopathy, including damage to blood vessels in the eye, inflammation and retinal cell death. The collection will include nondiabetic and diabetic tissue and is expected to be used for years to come.

SEE ALSO: Making Prosthetic Eyes That Look Like the Real Thing

Meanwhile, Eversight is working to increase the number of people who join the donor registry and consent to research to increase accessibility to eye tissue. The organization arranged the meeting between the Anegon family and Fort as part of its Hope and Healing program, which celebrates the gift of donated eye tissue to research.

“The Hope and Healing program gives families a chance to see the real impact of research donation,” says Colleen Vrba, Eversight research programs manager. “Knowing that your loved one’s donation is helping to find therapies and treatments for blinding eye diseases has a tremendous meaning for families.”

Visit Donate Life to learn more about organ, eye and tissue donation and to register as an organ, eye and tissue donor. Registration is fast and secure.