On This Episode

Hosts Dawn Prall and Shawn Doyle begin the episode with a conversation about the right diet and foods to eat with MacD. They not only discuss how diet and healthy eating are critical to living with macular degeneration but also share a number of resources and tips on foods that are eye healthy. 

Dawn explains why heart healthy living is eye healthy, including lifestyle choices, “eating the rainbow,” and taking in the right types of omegas and fish oil as examples. She elaborates on the importance of choosing a healthy lifestyle and diet—especially for the 80-85% of people with dry macular degeneration—since it is the only available treatment. 

In the next segment, Shawn interviews none other than his co-host Dawn Prall as the episode’s featured special guest. Dawn relates the story of how an unexpected phone call over a decade ago sparked a lifelong passion of supporting, educating and inspiring people with MacD and their families.

She explains how she received the call from food magnate, philanthropist and Macula Vision Research Foundation founder, the late Herb Lottman, who asked her to serve as executive director of his foundation. After taking the job, she shares how it was a top priority for her to learn facts and the science behind macular degeneration from scientists, researchers and other MacD experts. She adds how the most profound and life-changing moment occurred once she started to meet people all over the country who lived with macular degeneration. 

She goes on to tell how she founded The SupportSight Foundation as a non-profit organization singularly focus on macular degeneration, with a solid track record of effectively serving the MacD community—one that includes those who either have macular degeneration; have a loved one with it; or are in some way connected to the disease. Dawn concludes her interview by offering listeners hope with news about gene therapy-based research for future MacD treatments funded by the foundation.

Actress, singer, voiceover artist and SiriusXM radio show host Christine Pedi stops by in the next segment from New York City to share inspired adventures, as she navigates life through diminished vision and transitions into the world of visual challenges. In this episode, Christine offers relatable anecdotes about how she discovered her visual impairment during an on-stage performance of Noises Off, as well as a subsequent detached retina surgery at age 28. She closes the segment with details of her medical visits surrounding Strabismus surgery for her eye turn years later, interjecting humor as she relates her story. 

The podcast moves on to the regular featured segment from Vispero’s Bill Kilroy, Senior Sales Director for the Northeast, and Mike Woods, Strategic Accounts Manager for Education. Vispero is the world's largest Assistive Technology for the visually impaired serving people who are blind or low vision. Throughout the podcast, they highlight Vispero products that can enhance people's lives. In this episode, Bill and Mike introduce the RUBY® Family handheld video magnifier line of products. The Vispero duo provide detailed overviews for each of the four individual portable rechargeable magnifiers. They also highlight key features, such as a range of magnification and contrast settings, designed to make simple tasks not so cumbersome.

The show continues with a new guest interview segment featuring The SupportSight Foundation (TSSF) board members sharing their unique and inspiring stories about vision loss and impairment. In this episode, Dawn interviews TSSF board member John McInerney, who imparts his powerful firsthand story. He recounts how he was diagnosed at age 6 at the Massachusetts Eye and Ear Institute in the 1950s, elaborating how his condition called retinitis pigmentosa is very similar to macular degeneration, in terms of the way it progresses and is also an inherited disease. He shares his experiences from playing sports in high school; to receiving funding from the Massachusetts Commission for the Blind to attend Notre Dame; to his first time out of New England on a plane to

South Bend, Indiana at 17, knowing no one and being legally blind. 

John shares uplifting milestones from undergraduate, to completing his masters, to his first job as an engineer designing material-handling systems working for the government in Ohio. Dawn then follows his career journey as a manager for Westinghouse Electric Company where John shares his on-the-job challenges with accessibility and how he navigated the workplace—until he couldn’t. In a poignant moment, he also shares how he contacted the state’s Office of Vocational Rehabilitation to enter an accelerated rehab program at the Greater Pittsburgh Guild for the Blind while he concurrently worked. 

After finishing up his Westinghouse career as vice president, John went on to working in the blindness field, including a stint as interim CEO of the Pennsylvania Association for the Blind and serving as board member of BVRS in Pittsburgh and The SupportSight Foundation. John and Dawn wrap up the interview exchanging encouraging words and advice for anyone suffering from vision impairment or loss.

Other episode highlights include short soundbite segments where Dawn and Shawn have fun sharing trivia, as well as offer additional tips for low and impaired vision on the more serious side. The co-hosts close out the episode with information on additional resources.  

What We Discuss in this Episode

This third episode covers the following featured topics:

◦ “I think people will get a lot out of your interview, talking about your story, how you founded The SupportSight Foundation.” (2:04)

◦ “Diet and healthy eating is really critical to living with macular degeneration—there are all kinds of foods that are eye healthy.” (3:08)

◦ “What are some things people should have more in their nutritional plan for eye health?” (3:27)

◦ “A question that I would immediately have is where do people go to find out about right kind of diet to follow for healthy vision?” (5:30)

◦ “Today I have the privilege, the pleasure, to interview my co-host, Dawn Prall, who is also the executive director and the founder of The SupportSight Foundation. ” (6:48)

◦ “And so we created a program, the SupportSight Patient Education Advocacy Program, which was already there when I took the job, but we changed the model.” (14:40)

◦ “We often talk on this program, MyMacDLife about hope—what kind of research are you currently involved with that might give people reason to have hope for either a treatment or a cure for MacD?” (17:22)

◦ “The latest project that The SupportSight Foundation funded—and we just announced and are really psyched about—is a genetic study… We're also looking at funding some low-vision research.” (17:55)

◦ “I do have some stories from my previous experiences with visual challenges, specifically some of the surgeries I've had.” (23:50)

◦ “Today, the assistive technology folks at Vispero are going to be talking about the RUBY® Family. ” (32:34) 

◦ “The RUBY® is a group of four different handheld video magnifiers.... that when it debuted, it was by far and away an industry changer.” (34:52)

◦ “Here's another practical tip for living with macular degeneration: decrease glare.” (39:53)

◦ “We'd like you to learn more about the people who really are dedicated and committed to the mission of the foundation.” (40:47)

◦ “It would be a good thing for folks who are listening to get to know your story. So powerful a story, and it's best told to others by you. So where I think would be great for you to start is explain to the listeners, you’re visually impaired, and how your life has dramatically changed when you and your family got the news that you were diagnosed with retinitis pigmentosa.” (42:13)

Quotables

“I started to meet people all over the country who live with macular degeneration. And that was profound.” – Dawn Prall

“We have a constituency. By and large, the majority of them either have macular degeneration; have a loved one who had macular degeneration; or are in some way connected to the disease, because it is 1-in-4 people over the age of 65 have some degree of or some stage of macular degeneration. So it's that huge. And it's that real.” – Dawn Prall

“There's a lot of buzz about gene replacement therapy, and also stem cell therapy.” – Dawn Prall 

“I just hope that… we can move that needle. Because if we stay focused on it, like we are and we will, I know we can make a difference.” – Dawn Prall 

“We're going to talk about all sorts of silly things, important things, emotional things, angry things, you name it. I'm feeling them all, as I transition into a life filled with many more visual challenges.” – Christine Pedi

“The best thing I did was go to the rehab program and take advantage of the services that were available. And that helped me maintain my independence. It was, to be honest, really a mental thing to get over as much as a physical thing.” – John McInerney

“You just put your head down and just did it. You didn't let your vision issues, no matter what age, get in your way. And I think that's really an important message that the audience—and people listening—needs to understand.” – Dawn Prall

“It's important to advocate for yourself, so that you can maintain independence. And it's also important psychologically, to cross that boundary that says, ‘Okay, I have a visual impairment, I need to deal with it.’ That was one of the most difficult mental boundaries that I had to cross. Once I crossed that line, then it was okay. ‘Watch out, don't get in my way, there’s all kinds of technology out there, there's all kinds of opportunities, and the sky's the limit.’” – John McInerney

“That's the one piece of advice I want to say to everyone that is, you know, make the decision and go for it because if you don't, you're going to end up sitting in a corner, probably for the rest of your life.” – John McInerney

“And I think with the technology that's out there today, and organizations like The SupportSight Foundation, it's in everyone's best interest to maximize what they can do with their vision impairment in order to maintain independence, and to maintain a quality of life that that they use. There's just so many opportunities and so much technology out there today.” – John McInerney

Recommended Resources

- http://www.supportsight.org/

- https://www.nei.nih.gov/

- https://www.mvrf.org/

- http://www.mymacdlife.org/

- https://vispero.com/

- https://www.freedomscientific.com/

- https://www.freedomscientific.com/products/lowvision/ruby/

- https://www.enhancedvision.com/

- https://us.optelec.com/

- https://www.masseyeandear.org/

- https://www.mass.gov/orgs/massachusetts-commission-for-the-blind

- https://www.evas.com/pdflinks/PVC.pdf..

- https://www.evas.com/cgi-bin/htmlos.exe/Main.htm

- https://www.bvrspittsburgh.org/

- https://www.pablind.org/