Some blind people could be cured if medical research continues; foundation simulates blindness to raise funds

04/23/13 Janelle Irwin
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Blindness caused by degenerative eye diseases can be slowed or even reversed thanks to breakthroughs in medical research. That’s why the Foundation Fighting Blindness set out to raise funds for clinical trials this month by simulating what it’s like to eat what you can’t see. Foundation spokesperson and Mrs. World April Lufriu said guests of Dining in the Dark at the Vinoy in downtown St. Pete wore a foam and plastic mask for thirty minutes while they tried to enjoy their entrees.

“Your salivary glands are actually confused. I remember I thought I was eating chicken and it was actually beef last year and it’s a lot of fun. You hear people stumbling and knocking over their glasses, so you have to find the humor and stuff like that, but it’s very emotional, very rude awakening to experience something like this.”

There weren’t too many dropped dishes, but a lot of people didn’t eat much. One guy tried in vane to cut his chicken – he didn’t know it was chicken – with an upside down butter knife. The goal was to get people to see, quite literally, what it’s like to be blind. The Foundation Fighting Blindness focuses on retinal degenerative diseases like macular degeneration or retinitis pigmentosa. Jim Minow is the organization’s chief development officer.

“What they all have in common is they’re genetic in nature which means that often times they are passed down from generation to generation and we feel that if we can find the key to sort of genetic interference, so to speak, and among other things make a good copy of a bad gene that’s causing people to lose their vision, we can restore vision and, in fact, we’ve done that.”

One of the diseases the 42-year-old foundation funds the most research on is retinitis pigmentosa, or RP. Mrs. World April Lufriu organized a Tampa chapter of the foundation after she and her children were both diagnosed with the rare disorder.

“It’s like having blinders on and then the blinders close in. So, someone with advanced RP is like looking through a straw.”

Lufriu, whose sister is legally blind as a result of RP said the clinical trials funded by The Foundation Fighting Blindness has had very real success.

“We just made a big, huge breakthrough for people who have advanced RP and are totally blind. The foundation was really prominent in funding the new retinal implant that was all over national television. It’s called the Argus II, so we were a part of that. What it is, someone that’s totally blind gets this microchip in the brain – they wear these black glasses, they’re like a television and they’re able to see the outline of a door or the figure of a person so they can be mobile.”

Mary Lou Johnson Evans has a 17-year-old son with RP. Josh was diagnosed when he was six.

“The first thing to go is the peripheral vision so, even last week he stepped on top of the dog’s glass bowl and I said, ‘oh, she didn’t like that color anyway, she wants a new bowl.’ Those kind of things.”

Johnson held back tears when she talked about sending her son away to college knowing that his vision could get worse. She’s hopeful that a new process being studied that injects a virus into the back of the eye will slow her son’s vision loss long enough to find a more permanent cure. But until that time comes, Johnson said she worries about her son a little more than he’d like.

“Sometimes at school he feels that his eyes are getting tired if he’s doing a test. So, I had to get accommodations for that, but right now he’s doing well.”

The Foundation Fighting Blindness has raised a half billion dollars over four decades. Their chief development officer, Jim Minow, estimates that same amount will need to be raised over the next ten years to continue the progress they’ve started. And with mandatory federal spending cuts taking effect at the National Institute of Health which funds a huge amount of medical research, Minow said his job is even more important.

“No organization large or small - and as a $40 million organization we’re relatively small in the grand scheme of things – can replace the kinds of things that government does. So, while we will definitely be, using your words, upping the ante and raising more money, at the same time we’ll be working with Congress and the White House to maintain as much funding as possible. We realize these are difficult times for government and for tax payers, but we really believe that research dollars well spent comes back to societal benefit many times over.”

The Foundation Fighting Blindness will be back in St. Pete in October for a charity walk. More information about conditions and research initiatives is on their website.

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