Told as a child to expect no cure, vision-impaired Oakleaf woman now advocating for 'promising' research

Florida Times-Union - 4/27/2017

April 26--Adriann Keve was told at age 12 that she had a genetic condition that causes progressive vision loss. At the time, she asked her ophthalmologist if there were any treatments or cures.

"He told me there were none and there would likely be none in my lifetime," she said. "I was shocked. I just couldn't believe there was nothing they could do. ... I don't like being told no or that something isn't going to happen."

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Keve, now 34, helped make sure her doctor's prediction was wrong. She is president of the Jacksonville chapter of Foundation Fighting Blindness, which bills itself as the world's leading private funder of retinal disease research. Foundation fundraising, through such events as Saturday's 5K VisionWalk in Jacksonville, supports research that identified about 250 genes linked to retinal disease and launched clinical trials for potential treatments, according to the foundation website.

Keve's childhood diagnosis "definitely fueled my desire to work with the foundation as an adult," she said. "It's exciting and rewarding to know I've played a part in helping advance that research through my [foundation] participation."

The organization expects hundreds of people to attend the Saturday event and hopes to raise at least $100,000. Proceeds will go toward "promising gene therapy and stem cell and pharmaceutical-based research that could save and even restore sight," according to the foundation. Retinal degenerative diseases affect about 10 million Americans, according to the foundation.

Since VisionWalks began in 2006, the nationwide events have raised about $40 million for blindness research.

Keve has Stargardt's disease, the most common form of inherited juvenile macular degeneration. The disease causes progressive damage of the macula, which is in the center of the retina and is responsible for sharp, straight-ahead vision, according to the National Eye Institute, part of the National Institutes of Health.

"Since I was diagnosed ... I was getting by well in school and even played some team sports for a while, though when I was 14 I did give up softball shortly after being hit in the face with a ball I never saw coming," she said. "The biggest limitations I had in childhood that I remember are not being able to read the chalkboard at school and I compensated for that by developing exceptional listening skills and memory and I'd copy notes from friends after class.

"I started to realize in my high school years that my vision impairment was becoming something bigger than I could handle on my own, but I didn't know what to do, so I just kept my head down and did the best I could," she said. "I didn't learn how to advocate for myself until adulthood."

Keve grew up in Iowa, but she and husband Jason moved to Oakleaf in 2007. She had begun college in Iowa, dropping out from one school but making the dean's list and receiving an associate's degree at another after she discovered assistive technology that helped her keep up with coursework. After the move to Florida, she discovered the foundation and the Disability Resource Center at the University of North Florida, where she later obtained a bachelor's degree with high honors.

"That's a testament to what people with vision impairments can do with the right tools and it shows how much difference that can make," she said.

She was a web content writer until recently -- the site she wrote for was purchased by another company and liquidated -- and is now looking for work in the writing, publishing and editing fields or in disability advocacy. Meanwhile, she has started a blog on her own website, blindish.org, and is leading the foundation's Jacksonville chapter.

She is passionate about spreading public awareness of vision impairment.

"I most want people to know that there are many types and degrees of blindness and they don't all look the same. Many of us who are legally blind still have usable vision and may appear fully sighted at first glance," she said. "You wouldn't believe how many complete strangers approach me when I'm out at a restaurant and tell me, while I'm holding the menu a few inches from my face trying to read it, that I should get glasses.

"If it were that simple, of course I would have done that ages ago. I want people to think before making offhand comments like those. I've also seen people ... making faces at me while I'm wearing my dark glasses, thinking I couldn't see them," she said. "People with vision impairments can do most anything a sighted person can do, it just may not be done in exactly the same way."

Beth Reese Cravey: (904) 359-4109

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