Blind foundation spreads awareness of Butler resources
For many of the people attending last week’s Vision Connection luncheon, tasks like doing laundry or making food become challenges that they can’t complete themselves because of their lack of vision.
Thankfully, they don’t have to.
The Pittsburgh chapter of the Foundation Fighting Blindness hosted the Wednesday, April 9, event to share resources with the low-vision community — a group that was well-represented at the Blind Association of Butler and Armstrong, where the event took place.
Eric Bennardo, president of the Pittsburgh chapter of the Foundation Fighting Blindness, emphasized at the event the importance of connecting people who have low-vision or blindness to resources that can help, because it can make their lives a little easier.
“It's important for us to really grow the chapter in not only raising the funds to fund research to find treatments and cures to retinal diseases, but to spread the word about resources available,” Bennardo said. “Getting people as much information about what the foundation is doing, what the individual chapter is doing, how people can contribute monetarily or planning an event or organizing things.”
Bennardo, who is legally blind, said the chapter hosts events and webinars regularly to share information with low-vision people and their caregivers and families. This year was the first time the Vision Connection luncheon took place in Butler, which Bennardo said may have introduced people to the Foundation Fighting Blindness for the first time.
While agencies, including UPMC and the Foundation Fighting Blindness, had tables around the luncheon hall Wednesday, the speakers at the event discussed how blind people could “optimize their lives and how to function better with the vision they have.”
In his talk, Bennardo explained how he was diagnosed with retinitis pigmentosa when he was 2 years old. Retinitis pigmentosa is a genetic disease that makes cells in the retina breakdown slowly over time, causing vision loss, according to the National Eye Institute.
According to Bennardo, the Foundation Fighting Blindness was founded as the Retinitis Pigmentosa Foundation in 1971, by people who had the disease or had family members with the disease. Bennardo explained that the Foundation Fighting Blindness has resources for people born blind as well as those who lose their vision over time — the latter being more common than the former.
“Most inherited retinal diseases … It's typically not people who are born with no eyesight at all, but people who are born with sight, and they kind of gradually lose it in one way or another over the course of their lives,” Bennardo said. “Not all of those conditions lead to complete blindness. It literally depends on the individual case.”
Where Bennardo shared some experiences he has had as a blind person, Dr. Boris Rosin, who practices at University of Pittsburgh Physicians Department of Ophthalmology, spoke about research into diseases affecting eyesight. Rosin explained how vision is supposed to work, and how genetic diseases can disrupt the process.
“Vision is the composite of many things that need to happen perfectly in order for the vision to work,” Rosin said. “We talked about the lens of the camera, focusing the image on the film of the camera, the retina, and then there is an optic nerve the transmits this information to the brain. All of these stages need to be perfect in order for vision to be clear.”
Rosin also touched on recent research into possible solutions for blindness and eyesight deterioration. Gene therapy, he said, could be a path for researchers to take to address the loss of sight over time.
“Gene therapy is basically taking a virus and emptying it out of its infective components so it no longer causes disease and loading it up with anything you would like, and then infecting the retina with it,” Rosin said.
Any type of solution to blindness will likely have to be in the photo receptors, Rosin said, because they need to function properly, allowing the eye to translate light and send information to the brain.
Many of the people at the Vision Connection luncheon were no strangers to the stories Bennardo shared, and even some of the research Rosin presented into blindness solutions.
Jennifer Bindernagel, executive director at the Blind Association of Butler and Armstrong, said there are a number of blind people within the City of Butler, and the association provides some information and resources to them.
One important aspect of the association is emotional support for people undergoing vision loss, along with their families. Bindernagel said the effects of a gradual loss of vision can sneak up on a person in the form of small tasks that become more difficult with the loss of sight.
“Many people describe deep emotional reactions,” Bindernagel said. “Grief isn’t just about losing someone, it could also be about losing something important to us like independence, the ability to drive or the comfort of reading a favorite book without assistance.”
Bindernagel’s talk also addressed caregivers, who may be unsure of how to help or even interact with a blind friend or family member. Bindernagel said people with low vision may still want to be as independent as possible, so their inner circles could offer help to them without overstepping.
“I encourage you to listen with patience and compassion, let your loved one talk about how they’re feeling without trying to fix it,” Bindernagel said. “Sometimes the best thing to do is just be present. Encourage independence, not dependency. It’s tempting to jump in and do things for someone, but try instead to ask how can I help.”
No one was more familiar with all of this information than Judy Kahl, a trustee for the Foundation Fighting Blindness, who lives in Mars. Kahl began losing her hearing when she was 7 and had shown signs of low vision since she was a child. She has worked with the Foundation Fighting Blindness for decades.
While she was treated for low-vision and hearing loss, it wasn’t until she was in her 60s that she was diagnosed with Usher syndrome, a genetic disease that causes vision and hearing loss.
Kahl said even being accurately diagnosed for symptoms like blindness and hearing loss can be difficult — she didn’t realize anything was wrong for part of her life.
“I was not aware that I had any vision problems,” Kahl said. “He said the first symptom is night blindness. ‘Can you see at night?’ And I said I thought everyone saw like I did at night. I needed light.”
Kahl was the last person to speak at the luncheon, and left the seeing people in the audience with a challenge — to close their eyes while doing a chore — so they could better understand the lives of their blind family and friends.
“Set your timer for 10 minutes and continue to do whatever you were doing, whether you were going to make a sandwich, do your laundry, put makeup on. You can’t watch TV — and besides, where’s the clicker,” Kahl said. “All of a sudden, the simplest things in life have become a difficult task and you need assistance.”
