When Coleen Anegon's husband, Tim, received a liver donation as a patient at the University of Michigan in 2014, she immediately felt indebted to the donor who gave him the gift of life.
She returned the favor when Tim passed away due to complications following the transplant, providing her husband's body as an organ and tissue donor.
Tim's daughter, Courtney Anegon, admitted she was disappointed when she heard her father's eye tissue would be used by researchers working to cure eye diseases instead of going to a specific person. That was until she discovered that tissue could help millions suffering from diabetic eye disease.
The Anegons recently learned of the gift's outsized impact when they met with Patrice Fort, Ph.D., whose laboratory at the University of Michigan Kellogg Eye Center relies on tissue donation in its fight against vision loss.
"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.
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.
"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.
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."