Aug 15, 2022

Decades of Dedication Fighting for His Family and Himself

Beacon Stories

Dan Day is one of over ten people in his family, spanning six generations, affected with retinitis pigmentosa (RP). So to “get off the sidelines and join the fight” for himself and his family, Dan has dedicated over 25 years of service to the Foundation Fighting Blindness.

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Dan Day was diagnosed with retinitis pigmentosa (RP) in 1978, at 24 years old, before he noticed any symptoms of vision loss. But the diagnosis came as no shock to him, as his grandmother, mother, and all three of his siblings were all also affected with RP and already had a considerable amount of vision loss. Today, Dan is one of over ten people in his family, spanning six generations, affected with RP.

Dan Day dressed in his military uniform in 1975.

Dan and his immediate family had their genetic testing conducted at the Berman-Gund Laboratory for the Study of Retinal Degenerations at Massachusetts Eye and Ear Infirmary, the Foundation Fighting Blindness’ first funded research center, which was established in 1974. Prior to his diagnosis in 1978, Dan had not shown any symptoms of RP and had actually played college basketball and served in the military.

“When I got my diagnosis from Dr. Berson, he said we’re working on research, which gave me hope about my future,” Dan recalls. “I didn’t feel a sense of devastation; it was more a feeling of knowing I’ll need to adapt in life, but there’s no sense in stressing out about it now.”

Two years later, Dan remembers beginning to notice symptoms of his RP while driving. But since he was surrounded by family members with RP his whole life, Dan had already learned how to deal with adversity. Dan describes his family members, especially his mother and older brother, as strong, independent, and role models.

Dan's older brother, Gary, earned his master's degree in applied math, having no vision left at all. He was then employed by the federal government, working in a division that designed and implemented solutions to provide blind and visually impaired employees with access to information technology. He later went on to get his master's degree in computer science from Johns Hopkins University.

“It was honestly more emotional watching my older brother’s vision loss deteriorate faster than mine, but he’s a wonderful example of overcoming adversity,” says Dan. “Then it got to a point in my own vision loss journey where I figured it was time to do something about it. I wanted to get off the sidelines and do what I could to join the fight.”

In the 1980s, Dan moved to the Orlando, Florida area for work. In the late ‘80s, Dan had to give up driving. That milestone set him on a search to get involved with a blindness research organization, and around 1990, Dan joined the Foundation Fighting Blindness Orlando Chapter.

Dan Day at the recent Orlando VisionWalk.

Dan Day at the recent Orlando VisionWalk wearing his VisionWalk hat and t-shirt.

He has now been the Orlando Chapter President for over 25 years, is Walk Chair of the Orlando VisionWalk, a member of the Board of Trustees, and Co-Chair of the Reintsma 2025 Legacy Society (a division of the Victory for Vision campaign).

“To be able to watch the Foundation’s growth and be so close by participating is really fulfilling,” says Dan. “It makes me feel like I’m serving a good purpose, and hard to think of a better organization to support than the Foundation Fighting Blindness.”

Dan currently lives in Altamonte Springs, Florida, and has been retired for three years after working for AT&T for 40 years as an information technology specialist.

When Dan retired, he wanted to stay active, and since he had already been involved with the Foundation Fighting Blindness for more than 30 years, he knew he wanted to dedicate even more of his time to volunteering. So in the fall of 2019, Dan began to work with the Foundation’s Professional Outreach team.

Dan’s work with the team helps eye care professionals and low vision specialists in the Orlando, Florida, area provide vital resources and information to their patients with retinal diseases to better understand and manage their conditions. Dan also wants these practices and offices to include information about the Foundation’s My Retina Tracker® Registry and the free Genetic Testing Program.

Dan calls and contacts as many retina and low vision specialists in the area as he can, and his persistence has paid off. Dan recently connected with a low vision specialist in Winter Park, Florida, while attending the VISIONS 2022 conference.

“As a professional outreach volunteer, I want to be able to provide hope and add value for doctors and patients, like the Foundation’s free Genetic Testing Program,” says Dan. “And we’re not just trying to reach medical professionals. I’ve even had great success in collaborating with organizations like the Lighthouse of Central Florida.”

With all of Dan’s networking for the Foundation, he’s also found personal value in being surrounded by, what he refers to as, high-quality people in his life.

“It’s nice to have a resource like the Foundation and the community it gives you, that can continually give you hope,” says Dan. “People have said that they appreciate what I do for the Foundation, but my efforts are really self-serving, in my opinion. Almost my entire immediate family is affected by RP, so I get much more out of the Foundation than I give back. The value is immeasurable to see the research progress over the years, and the speed at which it’s advancing now is very encouraging.”