When a patient is diagnosed with a condition for which there is no cure, Dr. Ed Stone never wants them to hear, “I’m sorry, there’s nothing we can do for you.”
Instead, he and other members of the University of Iowa’s Stephen A. Wynn Institute for Vision Research want the patient to know that no cure today doesn’t mean no cure in the future.
The Wynn Institute focuses on developing treatments for all forms of genetic
blindness, ranging from very common conditions like glaucoma and age-related macular degeneration to rare disorders like Stargardt disease.
Stargardt disease is similar to macular degeneration but is typically diagnosed in people under age 20. Pam Devine, 48, of Iowa City, is something of an outlier — she was diagnosed with Stargardt disease at age 30.
For Devine and others with the condition, deposits build up over time in the eye’s retinal area, slowly obscuring the patient’s central vision. Devine says it’s like having a blurred circle in the center of her eye. If she looks at something straight on, it is obscured, so she has to look at it from the side, using her peripheral vision. The blurred area gets progressively bigger over time.
She is one of the lucky ones — after almost 20 years, the accountant can still read with the help of large print books and magnification. She is also still able to drive. She says many people with Stargardt’s disease are legally blind for driving purposes after just a few years.
The 29 faculty members who contribute to the Wynn Institute’s work are hoping that in the not-too-distant future that will no longer be the case. The Institute, a collaboration of researchers and doctors across eight departments and four colleges at the UI, was named after a $25 million gift in 2013 from businessman Stephen Wynn.
“That allowed us to increase our efforts on gene therapy and stem cells grown from a patient’s skin cells,” Stone says.
It also increases their ability to fulfill one of their guiding principles of treatment..
“Some people would define treatment as the ability to stop or reverse the disease. That’s our goal,” he says. “But a very important part of treatment is being interested in the patient and what they have.”
He says the team constantly asks themselves — what would I want to happen if it were me or my family member being diagnosed?
“Even now, if we’re given one of these (at the moment uncurable) diseases, we can go try to find the cause of the gene and kind of get them all plugged in to this international research effort,” he says. “Part of the treatment is embracing the idea that there’s this large research effort underway working toward cures for these things.”
For Devine, that means hope for the future, for herself and others with Stargardt’s disease.
Researchers have isolated the mutated gene that caused the disease, and they have grown stem cells from her own skin cells.
“Hopefully they’ll be able to inject those skin cells into the diseased area,” she says. “We’re hoping to stop the progression and possibly reverse it.”
That might not happen this year or next year, but she’s confident it’s coming.
Watch for the Wynn Institute at the Indy 500
•Watch the Indy 500 Sunday to catch a glimpse of the No. 91 University of Iowa Stephen A. Wynn Institute for Vision Research Dallara/Chevrolet/Firestone car in the 98th running of the 500-mile race.
•Buddy Lazier, the 1996 Indy 500 winner, will drive the car. He and his supporters donated the sponsorship to raise awareness about the institute’s research.