Taking blindness out of the dark

Perry County
Taking blindness out of the dark
Perry County women take to annual VisionWalk in hopes of finding cure for their children.


Sisters Barbara Bronson and Mariann Campbell will be involved with the VisionWalk in Baltimore this Saturday to help raise money for The Foundation Fighting Blindness.


For more information on the walk or to donate money to their team of walkers, go to www.visionwalk.org, and search for the sisters’ Perry County team, “Out of the Darkness into the Light.”

By Naomi Creason, Sentinel Reporter, April 27, 2009


Mariann Campbell (sitting, holding child) and her sister Barbara Bronson (sitting by the post) have a hereditary degenerative blindness gene they have passed on to their children. Pictured left to right: Nathaniel Bronson, 9, Mcenzy Campbell, 12, Aidan Campbell, 3, Mariann Campbell, Bronson, Colton Campbell, 8, and Ariana Campbell, 12. (Jason Malmont/The Sentinel)

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When Barbara Bronson took her 3-year-old son, Nathaniel, to the optometrist for his first checkup six years ago, she was not expecting the words that left her doctor’s mouth: retinitis pigmentosa.

All Bronson knew for sure about it was that a retinal degenerative disease did not sound good. And that was pretty much the only information she was left with. The disease would claim her son’s vision, but the doctor knew of no cure, no treatment and no way to slow its progress.

She left the doctor’s office with more questions than answers.

“They just walk you out of the office with no answers,” said Bronson of Duncannon. “Most family doctors just don’t pick up on it. My doctor was really hands on, but most are just not trained to look for it.”

For a few months, Bronson didn’t want to think about how her seemingly healthy boy would lose his sight in a time frame that no one could pin down. But eventually she started her research and starting seeing things she hadn’t noticed before.

Two other male family members were struggling with their eyesight, both in their late 30s but never diagnosed with the disease.

That realization, however, was a little late for her sister, Mariann Campbell. By the time the Millerstown woman realized what was happening with her sister’s now 9-year-old son, Campbell already had two sons, Aidan, 3, and Colton, who is 8 and had not been diagnosed with the disease at his first check-up.

She brought both her sons into the doctor’s office and found out both had RP.

No genetics testing has been done on the boys, but given that five, almost six, men in their family on their mother’s side had been diagnosed with RP, Bronson and Campbell heavily suspect that the disease in their family is a rare form called X-linked, where women are carriers of the disease and can pass it on to their sons.

“You never want to pass anything like that on, especially when you don’t know how fast the disease is going to move,” Campbell said. “But (now that it’s happened), I couldn’t just sit back and twiddle my thumbs.”

The two scoured Web sites trying to find information about RP and eventually came upon the Foundation Fighting Blindness and its annual VisionWalk.

Looking for solutions

The Foundation Fighting Blindness is the leading non-governmental organization funding retinal disease research. The organization was initially started because of its founder’s battle with RP, but it has since grown to fund research for other forms of retinal degenerative diseases, including Leber congenital amaurosis (LCA), which some people may recognize as the cause of former “American Idol” contestant Scott MacIntyre’s condition, and age-related macular degeneration (AMD), which affects more than 10 million Americans 55 years and older.

Though AMD affects millions of Americans, RP and LCA do not, which proves to be a sticking point when it comes to research funding.

“A lot of the issue in funding is because blindness is inherited,” said Angela Vasquez, director of communications and marketing at the foundation. “Government wants to spend money on research that will affect millions of people, so they don’t put a lot of emphasis on something that affects a smaller population.

“Macular degeneration affects millions, and because we have an aging population, the prevalence of that disease is going to continue to grow and a great amount of emphasis will be placed on that,” she added. “That’s why we feel that what we do is important, because we’re giving more attention to something that otherwise wouldn’t have received it.”

The funding, including more than $7 million from three years of VisionWalks, has helped researchers develop clinical trials in which stem cells are transplanted into mice to restore vision in those with RP and severe vision loss is treated with gene therapy.

“Some of the research also deals with cross cutting, which means that the work on one disease may have potential to apply treatment to another disease,” Vasquez said.

Both results from preliminary trials allow Bronson and Campbell to keep hoping for the best. But neither woman is willing to settle for just waiting for the trials to come to them, especially as Nathaniel and Colton are already showing signs of vision loss, particularly in dimly lit areas. They are planning to keep raising awareness of retinal degenerative diseases and keep trying to pull more money into further research.

“We want to create a Harrisburg walk,” Campbell said. “There’s one in Philadelphia and one in Pittsburgh but not one here. I’m sure there are other families affected by this in the area.”