Westfield resident Rick Poplin learned he was going deaf and blind at age 35 when he was diagnosed with Usher syndrome Type 2.

Usher syndrome is a condition characterized by partial or total hearing loss and vision loss that worsens over time.

Now 43, Poplin no longer drives. Everyday tasks are more difficult. But Poplin is using his experience to help others as resource chair of the Foundation Fighting Blindness Indianapolis Chapter.

“My whole world was rocked,” he said. “I wanted to find out current research and stuff like that and I couldn’t really find it from my doctor. Some of the in-the-trenches stuff you can never find. That’s what got me connected to the foundation. It’s an opportunity to speak to people all over the world.”

Foundation Fighting Blindness was founded in 1971. The Indianapolis chapter was established last year. The foundation’s goal is to drive the research that would lead to preventions, treatments and vision restoration for the spectrum of degenerative retinal diseases.

“(Researchers) are isolating the genes and finding cures or ways to bring light back into people’s dark worlds,” Poplin said. “It is really nice to see that. For me, (seeing the research) was big because as a person, as a patient who is already suffering from a degenerative retinal disease with no cure, it’s comforting.”

The Indianapolis chapter will conduct its inaugural fundraiser, Birdies Fore the Blind, June 30 at Ironwood Golf Club in Fishers. The event will raise money for the chapter and its initiatives.

Poplin said before his diagnosis, he was extremely active and enjoyed playing basksetball.

He hasn’t driven a vehicle in eight years since his diagnosis.

“So, that’s kind of a bummer,” he said. “Day to day, I have my family, my seeing-eye people. They really do a good job supporting me and getting me where I need to go. I move forward just like any other person. I have bruises and cuts all over my shins from running into things. I don’t have peripheral vision. It’s like looking through a straw.”

Foundation Fighting Blindness Indianapolis chapter President Angie Kirchoff said community is very important for people with vision loss. Kirchoff was diagnosed with retinitis pigmentosa, an inherited degenerative disease, at age 32. Now 59, she’s starting to experience the effects of her disease. She was paired with Abbie, a black Lab guide dog, in 2021.

“My interest in the foundation is to try and find a cure for this disease,” she said. “The foundation is the world’s leading driving influence behind research and funding for clinical trials to find cures for various types of retinal diseases.”

Kirchoff was asked by the Foundation Fighting Blindness engagement manager in Chicago if she would serve as president of the new Indianapolis chapter. Kirchoff immediately said yes.

“Our biggest mission is to reach out to this area to those who are affected by retinal disease and provide support,” she said. “We are at the forefront of research and know what type of clinical research is being done for them. Our ultimate goal is to provide a mentor relationship for them, help them find resources in the area that can help them and also give them a source to go to for genetic testing.”

For more, visit fightingblindness.org.