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2014 Jacksonville VisionWalk Chair discusses living with retinitis pigmentosa

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The Foundation Fighting Blindness and 2014 Jacksonville VisionWalk Chair Megan Mauney go way back. Megan, who has retinitis pigmentosa, first became involved with the Foundation Fighting Blindness (FFB) when she was about six years old. Her mother began taking her to FFB support group meetings over 20 years ago, and Megan felt out of place because everyone else was so much older than her. Subsequently, Megan lost touch with FFB for a while.

2014 Jacksonville VisionWalk

However, about five years ago, Megan felt a little down about having retinitis pigmentosa (RP) and wanted to find some support, so she reached out to the Jacksonville FFB Chapter and immediately became involved with Jacksonville’s first annual VisionWalk in 2009. Since then, Megan has been an active member of the Chapter’s leadership committee and an active participant in every Jacksonville VisionWalk.

Megan was diagnosed with retinitis pigmentosa when she was six years old. She had 60° of vision at the time, and, like most kids, she didn’t understand how RP was affecting her life because it was all she had known. Kickballs to the face and frequent falls were just the norm to her. Megan went through a difficult time in high school where she watched her friends get their driver’s licenses, though, and she knew that with 20° of vision left that a driver’s license wouldn’t be a milestone she got to experience. She fell into a deep depression and felt really alone in her struggles. This difficult time in Megan’s life set her on a path to obtaining freedom and independence through a guide dog, which in turn ignited a passion in her to help others like herself. Not only does she help people with disabilities through FFB; she helps people every day through her work as an internal disability services consultant for a major health solutions company. Megan even says she’s “almost grateful” for having RP because it was the catalyst that set her on her current path.

As if she isn’t already involved enough, Megan even spends a portion of her free time educating others about blinding diseases. When she’s not spending time with her family and friends she’s maintaining her blog, Blind Girl Problems.

Megan enjoys being involved with FFB because it provides her the opportunity to connect with like-minded people. She also hopes to inspire the next generation of kids with visual impairments. “I get to help kids like Brendon [Cavainolo],” says Megan. “Even though we don’t talk directly about our shared challenges, I just hope to set a good example. I hope that one day he looks back and looks up to me.”

As a result of her involvement with the FFB, Megan hopes to see a cure for retinitis pigmentosa. She remembers being told as a child that there should be a cure for RP in her kids’ lifetimes, but now, 20 years later, she hears there should be a cure in her own lifetime. “I just look forward to a future where no one has to live with even a moment of fear of being in the dark,” says Megan.

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