Transcription excerpts from this episode
macular degeneration, people, MacD, ruby, foundation, podcast, vision, disease, magnifiers, resource, life, Dawn, research, family, advocacy, sizes, treatment, retina, text, functionality
Welcome to MyMacDLife and powered by the support site foundation. This podcast is about macular degeneration and the devastating impact it has on millions of people and their families every single day, 365 days a year. Our mission is simple to bring hope, optimism, perspective and education to our listeners. So tune in, buckle up and put your listening ears on.
Hi, I’m Dawn Prall, founder and executive director of The SupportSight Foundation. MyMacDLife the podcast you’re listening to and tuning into right now is empowered by the support site Foundation. We are a voice you can trust. MyMacDLife is the first podcast series about how to live your best life with macular degeneration.
MyMacDLife podcast is generously supported by Regeneron
Hi, I’m Hilary Stunda. And this is MyMacDLife, a podcast that brings hope and optimism to people living with macular degeneration. Each podcast shares an experience or powerful story that helps us understand the disease that affects so many people around the world. MyMacLife podcast is all about helping those with MacD live their best lives independently by motivating them to use the available technology and get easy access to information.
Today, I’m thrilled to be speaking with Dawn Prall, the creator of my MacD live podcast and the founder of The SupportSight Foundation. The majority of Dawn’s work has been in the healthcare and social services industries. In the last decade, she has become a champion of low vision patient education, and is here to tell us her story.
Thanks for joining us today, Dawn.
My pleasure, Hilary.
So Dawn, how did you come to The SupportSight Foundation and the low vision world?
I arrived a little over 12 years ago. I’ve dedicated the majority of my career to health care, and also seniors. I arrived when I got a phone call out of the blue from the founder of Macula Vision Research Foundation. The SupportSight Foundation is formally known as that, we changed the name but that’s a whole nother story. I didn’t know anything about macular degeneration like most people. I immersed myself in the first year, and I had the benefit and privilege of hanging out with a bunch of scientists, researchers, and doctors. I was used to the doctor’s crowd, I’m not one but I was used to them being in health care most of my career, I geeked out with them. And I learned a lot.
So was that the inspiration for how you wanted to structure The SupportSight Foundation?
Yes, that was my inspiration because I would geek out with that group, learn about the science, learn about the the impact that finding new treatments and a cure would have on millions of people. I also had the privilege and honor of traveling around the country because we have a national footprint, then I would meet with patients I would meet with people who had lost their vision because of macular degeneration and their families and witnessed and firsthand the impact that has when you can’t see, one thing I knew for sure is I had to stay in it. And here I am a dozen years later, still doing it.
So you realize that there was sort of a need for this information in one particular area because people would get diagnosed, and then they were left sort of hanging, not really knowing where to go next?
That is the perfect way to put it. Thank you left hanging because this is a disease. I mean, we all have eyes real, you know, that doesn’t discriminate, right? And they patients would get the diagnosis that that they would lose their vision and over time and there was a lot of thought of doctors would say and there’s nothing we can do about it, which it changes people’s lives instantly. And then there was this gap. No, what do I do now? And that’s the gap that we fill very well with The SupportSight Foundation and our mission. We are that resource that is solely laser focused on the disease. We are a disease specific charity. And we don’t deviate from that. You know, science changes. Research makes medicine research, advances the medicine of the disease. When you get that diagnosis, and you make an appointment to go back to your retina doctor, in six months or a year later as they’re following and monitoring your vision loss, that’s what they do well, they take care of the health of your eye. What we do well is we fill in everywhere else because you have to go back home, or work or to your family, and do the things that you love to do like reading, watching TV, you know, all sorts of things. And when you lose your vision, because of macular degeneration, those things become very hard to do.
MyMacDLife podcast is brought to you in part by Centric Bank, Healthy Vision Association, Finkelstein and Associates, Novartis, Regeneron, Vispero, and from anonymous donors,
You know, it strikes me is, is it’s very interesting that there’s, there’s not a lot of information about MacD as being such a major disease for so many people. There’s a lot of talk about diabetes. But why do you think that’s the case with with MacD?
The reason that we all know a lot more about diabetes, and which is devastating as well and impacts millions and millions of people. I mean, I have lots of friends, for example, and family who have diabetes, it’s scary stuff, you can live your life with it and follow a regimen as we all know, well, the same thing is with macular degeneration, but what we didn’t know 40 years ago, let’s say is anything about what we call it as the cellular makeup of macular degeneration. And we know a lot more about that, that scientists do in the public does because of Macular Vision Research Foundation, and because we started fueling that science. And then all of a sudden, people realize, because you have to understand the cellular aspect of it before you can actually be diagnosed with it. So we’re sure that generations prior had it. They just didn’t know it.
There’s the dry, MacD, and then there’s the wet MacD. And if you could, explain to me what that difference is. And if more people have wet than dry and how that affects the population?
We are the go to resource, and you’ve done your homework. Thank you. What the doctor doesn’t have time to do is explain all that to you. So you have to go out there, thank God for the internet’s right? And you know, you have to go through to, people have to access the resources to gain the knowledge. And we all know there’s a lot of information on the web. That’s not necessarily accurate that you know, and you have to sift through that. And when you can’t see very well. That’s a daunting task, right? So we put it all in one place. We keep it simple, and we explain it. So macular degeneration has stages. It’s a retinal disease. And I know there’s two types, there’s dry and there’s wet and 80-85% of the population has dry and 10-15% have wet wet macular degeneration is more advanced in it right now. As we speak, wet macular degeneration it, there’s a treatment for there are treatments for it. Okay, those are those injections that I’m sure our listeners many of our listeners have had to experience and family members take them to the doctor or you know, caregivers. So they’re in a routine of that. And those anti VEGF treatments are the option for wet dry macular degeneration is the area where we are putting a lot of dollars into the research for dry because obviously more people have dry. And that’s an area where there’s currently no treatment other than vitamins, things like that. So we bridge the gap between the doctor and they do their job and or the eye doctor and then again, learning about how to cope with it. And then really helping people understand the research. Obviously you give money to us whether it’s large or small, whatever donation and it fuels, the research projects.
Right. Can you explain the process for how the research is funded? Whether it’s going to specific sessions for a particular way, whether it’s for wet or dry, or if it’s going for one particular research aspect or if I want to give money to The SupportSight Foundation? Can I go online and check a box or two that where it will tell me where my funds are going?
Well, absolutely, we want people to go online and give to to The SupportSight Foundation, we are a 501-C three, obviously a charity. And that is, you know, a disease charity. And the research that we fund is projects by the top scientists, experienced scientists all over the world. And research is iterative research makes medicine. And research is not as separated. So for example, it’s a retina disease. So the more scientists or researchers know about the retina, and how it functions in the within macular at causes macular degeneration or functions, to those cells die in the retina. And so this is all about regeneration of cells, hence, macular degeneration. And it’s all about understanding the retina connects to the optic nerve, and the optic nerve to the brain. So you don’t really see with your eyes you see with your brain. And the retinas job, it’s a camera, basically, and the macula is in the retina. So people you know, a lot of I’m sure people listening, either whether they understand that part or not, what really matters to them is that there’s no cure. And what really matters to them is what do I do in the meantime, which is what we do.
MyMacDLife podcast is a national award winner of the step program for innovative macular degeneration, patient education and for demonstrating a commitment to addressing the daily needs of people with age related macular degeneration.
You see it evolving the this field of research for macular degeneration over the years?
Absolutely. Oh, my God. Absolutely. I mean, that’s the point, right? It’s not static. And scientists are, you know, their job is discovery. And that’s what they’re really good at. And their job is understanding how that retina works and why those cells are dying. And what’s causing it is external isn’t genetic. And they need money to do that. At The SupportSight Foundation, and my staff and the team of researchers, we lead that way. And we don’t deviate.
And I love the part of the site that says age related, you know, it’s called AMD Central. And I just think that is such a great spot. Can you talk about that a little bit?
That’s not our site. But thank you. That is our project. But yeah, because and that’s, I think one of the things that to piggyback off of, you know, being a leader, a nonprofit leader, and having the passion I do for seeking a cure for, for the millions of people all over the world who suffer from vision loss, because we don’t want generations to come to have to deal with it, we want to cure it, we want to get a treatment out there, and let’s get our job done. But we can’t do it alone. You know, we I recognize this a champion, as you said earlier that that MacD is much bigger than all of us. So there are other organizations and my colleagues that that we lead the way to collaborate with them to create this resource, as a trusted resource on behalf of all of us kind of four or five dentists recommend thing.
Have you have you been successful in raising a lot of money through the site?
Overall, we’ve raised close to $30 million to feel that research and their public education so that everybody knows the disease, like you said. Seperate time conversation is not just about arthritis and diabetes, but MacD is in there.
It seems that it is catching on as a catchphrase people more people. But I’ve been running into know about MACD. I mean, it’s something that has popped up.
It’s funny, what do you know about it? Then you realize there that that is kind of like when I got, you know, a Murano for example, I first drove him around and I look around driving, I see all the Murano on the road, right. You know, but one in four people over the age of 65 have some level of macular degeneration. So once you know even the name and a little bit about it, you say it, and it’s a silent disease to most people don’t tell you right away they have it.
I’m sure lots of people don’t realize that they actually have it because they think oh, I’m just getting older. This is the process of aging, and there’s nothing I can do about it.
Well, that’s what we’re trying to change. Right?
Yeah. As an expert in the field of low vision and macular degeneration, How hopeful are you that there will be a cure for this disease?
I am so hopeful that I there is not a word to describe it. We know that there will be a cure. We know that it’s just a matter of time. And again, the the thing about curing disease and treating diseases, you got to know it’s there, you got to identify how it works in the body, you got to figure out what triggers it or what causes it just, you know, cancer, I use cancer as an example, or look at the diabetes, there’s a treatment for it, we will be in that category. Or I wouldn’t be doing this. And I would love to work myself out of a job. Because you know what that means that we have held, done it, we have accomplished, we have crossed the finish line. And we are a lot closer than we’ve ever been. Because there’s more knowledge out there. Every time there’s something is discovered, like look at the Cancer Moonshot. Every time somebody discovers something that moves that needle. And that’s why we are hopeful, but I say optimistic. It’s going to work, it’s going to happen. I love it. I love your infectious passion towards doing good things in the world.
Where did this come from, Dawn? Or did you grew up in a family of altruistic social activists?
No, here’s where the values kick in. You said you have to think about where we’re from whence you came, the values kicked in it doing good, caring about other people. We moved around a lot, I was a sales brat. So I always had to make friends every two years, you know, and I was always the new girl in school. So in terms of the fundraising, and and, you know, that’s building relationships, that’s being approachable. And actually, I’ve always been happy. I mean, that doesn’t mean that I don’t wake up in a bad mood or have, you know, just like everybody else, but I, my mother and my great grandmother, everybody in my family. You know, we are from originally from the Midwest and everywhere west of the Mississippi. So those values are intrinsic to me are entrenched in who I am. And I love that I know that about me.
And, and the one thing I also know is you have to believe in something and stand for something and my family values were more about making sure that there is a passion, there is something meaningful in your life. And then you just build your life around that. So when I wake up every morning, I have two choices. Either I’m happy or I’m not. And when you for so that translates to everything right, Hillary? I mean, does it translates?
Yeah, well, it’s a beautiful thing, because you’re on your path. And your path is doing good things for the world.
It’s an honor for me to do that. And it’s a privilege and it is also a mission, that The SupportSight Foundation can make a difference in people’s lives and move that forward, is what we’re doing and those tiny little things add up. Because we are on to something on the research, you know, go on the website, people see that and MyMacDLife this podcast in this program has given us a microphone, if you will, to bring people together to tell their stories to create this community. And it’s pandemic proof. And it’s evergreen. And we don’t have to travel to states all over I mean, we just it enables us to do a lot more in a more powerful way.
I give to The SupportSight Foundation because I just found out that my mom has back tea and I want to be a part of the cure. MyMacDLife is important to my mom and I and we share the stories from my MacD life with each other all the time. I want to play any role that I can to help my mom and to help the people who have MacD.
The SupportSight Foundation is a 501-C three public charity. We rely on donations from people just like you any gift large or small. It all adds up. It fuels our mission. Thank you for your money.
It’s wonderful because it really gets rid of the despair. Someone can go on to a podcast and understand that they’re part of a community. There’s information that’s easy to access. And they can have a little bit of hope at the end of the day that they’re not really as lost as they think they might be. And I think that’s a powerful thing.
The foundation we’re about relationships. We’re boutique, we’re unique. There’s nothing wrong with the larger organizations. There’s a few of them out there. There’s nothing wrong with that, but our personality is intimate, is relationships centric. Our personality is warmth. And warm-big, warm-giant.
Wonderful, that’s great.
Thank you, Hillary, I never pass up an opportunity to communicate effectively. And we all have a responsibility to share what we do. And that’s what I’m doing. I’m sharing with everybody to join us.
How is the approach of The SupportSight Foundation changed over the years to advocate for people who have macular degeneration and the people around them?
Advocacy is key to what we do. Advocacy and education are hand in hand. And this is a disability. Losing your vision as a disability. And so the power of advocacy comes again, from the knowledge of the disease, from the experience that people have in losing their vision when they’re diagnosed, and then sharing it with their friends and family and caregivers, and then sharing it with the rest of the world.
So, our advocacy is embedded in everything that we do. We know that when people band together and understand and are joined the cause, and then get behind us and get with us. And we know the direction to take, that message and that really huge, loud, bold voice makes a difference. So we gather that up and, and take it to policymakers, to funders, to community to all the way down to the community level. And we guide it. So not that we lobby, but we advocate for change, and we advocate for a better treatment…This world’s not set up for low vision.
So that’s an extreme example. But so and so we advocate in that way. Just everyday things like font size and bold [fonts], and accessibility on computers and laptops, those kinds of things. So it’s changed like that the advocacy at first was just awareness of the disease and people understanding the word, Mac words, macular degeneration, and it’s out gone all the way to accessibility on your Mac, assistive technology that you can use. So that’s all advocacy. And we’re really good at it. Because there’s a force behind that when we get everybody who’s listening and everybody who’s affected by it, to join that. Be that force.
Thank you, Dawn. So sign me up! What do I need to do to be a part of it?
Let’s sign everybody up who’s listening, right? And then they’re gonna sign everybody up and tell everybody to listen. That’s the power of it. That’s the grassroots in me. Here’s what you do. Go to online, go to supportsight.org
Learn more about us go to mymacdlife.org. And of course my MACD life is empowered by The SupportSight Foundation. We’re empowering millions and millions of listeners. And also, give… We’re nonprofit, and it takes resources and money to do what we do. And also, share your story. Help us build that community. Bring 10 other people with you.
You got it.
So everybody listening Let’s all do it. That’s the call to action.
Well, thank you so much, Dawn. I think you’re doing incredible work and we’re really excited about the breakthroughs that are coming down the pipe for MacD.
Hi, everyone, this is Dawn Prall, founder and executive director of The SupportSight Foundation. This is MyMacDLife, our award-winning podcast. You’re listening to one of my favorite things that we do. Product Spotlight. And it is sponsored by and brought to us by Vispero. We couldn’t do this podcast without them. The goal of this segment is to let folks out there know about assistive technology devices that you can use to make your life better, to become more independent, and to perform tasks that you that you may struggle with, living life with MacD. You’re losing your vision. You want to read your mail. And so we have Mike wood here today.
Hey, Dawn, thanks for having me.
You’re the man on MyMacDLife Product Apotlight. People probably recognize your voice. Mike’s an expert as far as I’m concerned, and is the best guy to really talk about the devices, as I mentioned, that Vispero makes.
We appreciate the opportunity to share some of this information with the individuals that are on my MacD live listening in.
Yeah, our audience. We want to share as much as we can with you. But you guys make these products that help people. Period stop. Today I understand we’re going to talk about the Ruby family of products. Is that right?
That is correct.
Sounds good. What’s the Ruby family? Mike?
The Ruby family is a family of video magnifiers and the reason we say family is because the rubies come in multiple sizes.
Are they red? They are red.
The Rubies are a video magnifier. So many people on MyMacDLife might be familiar with optical magnifiers, which are handheld and phenomenal.
[Like] Sherlock Holmes
Sherlock Holmes style. That’s it. And once you need to change over you need a stronger power. I usually recommend to people it’s time to look at the video magnifiers because they offer a lot more functionality and a lot more strength in a small device.
So they’re portable. They are handy dandy. They fit the pocket. Well, some of them do in the Ruby family.
They help you do things like let’s just take a task like reading the mail. Just like spot reading? Is that correct? For some of them in the Ruby family?
Yes. The smaller ones are great for spot reading. You know, some of the things that people love these for are [when] you go shopping, you looking at the clothing tags, looking at price tags of clothing. Or the grocery store, looking at the back of a pasta box to read the ingredients, also going to restaurants to read the menu. So this is going to be more spot reading. If you were going to read something like War and Peace, you wouldn’t be using the Ruby.
Everybody needs that when you have low vision and can’t see as well, even if you do or don’t have MacD right. Could you tell folks the sizes of [the Assistive Technology devices]? What do you offer?
Absolutely. It comes in a couple of different sizes. We have a 4.3 inch LCD screen, we have a 5 inch LCD screen, we have a 7 inch, and then we have a 10 inch. So you’ve got a wide range of screen sizes. Another thing I want to point out is the quality of these products is phenomenal. I can’t tell you how many times I’ve been at a conference and somebody will come up to me. And they’ll have this beaten and battered case that they’ve carried their Ruby around in. And you can tell that this thing has been used, you know, it’s not designer. It has been and they pull it out. And they say this is my favorite device. I love this thing. You can look at it you can see that it’s well used, but it’s well loved also. They use it for everything. And they love it. They’ve taken care of it. So it’s working for them.
It’s like a member of their family. How do they work?
They work by one thing magnifying your text. So I’ll start out with say the RUBY HD which stands for High-Definition. All that’s letting them know is that the camera that it’s using is a high definition camera so you get a really crisp, clean view of the text that you’re magnifying. That 4.3 inch screen allows you to magnify from 2x magnification all the way up to 13x magnification.
For our listeners, what is that “X”? What does that mean?
It’s multiplication, basically. So if you have something that you’re magnifying and you do 2x, you’re just doubling the size by twice that number. If you’re doing it by 5x, you’re multiplying it by five. You’re making it five times larger than the the original text is.
The camera does that? All these things have a camera?
Correct. They also have functionality of giving you a guideline. So it’s easy to follow along, if you’re reading a line of text. Or if you find that you have visual clutter issues, you know, you might have too much text on the screen, you can actually do something where you can cut out some of the text and look at just a line of text.
So like and that’s, that’s
A lot of folks with Mac D, for example, don’t see in a straight line. It’s wavy. So you’re saying these devices help that as well, is that what you mean by clutter?
They’ll give you a line to follow along. So it will make it a little bit easier. And if you use the masking functionality, it will cut out the line above and below the text that you’re looking at. So we’ll make it a little easier to follow along that line of text. They have built in handles so you can use these similar to an optical magnifier. They’re battery powered. So some of these use AAA batteries, other ones use built in lithium ion batteries.
Do you charge them like a smartphone or something. Is that what you do?
Good, everyone knows how to do that now, exactly. And and the nice thing is some of these do come with the capability of swapping the batteries out. So if you’re somewhere where you’re not near a charger, but you can buy batteries, you can just swap out the batteries. A lot of the newer ones, though, are just going to be like a cell phone where you you can’t change the batteries yourself, but they hold a charge a lot longer than those AAA ones do.
So you mentioned sizes. We said 4.3 screen, five inch, seven inch. These are screen sizes.
And then 10 inch screen size. it becomes less pocket size. Yes, right. Yeah. But still very portable. You know, for example, the largest Ruby 10, which is the 10 inch, widescreen, you know display. Really, it’s not that heavy, it weighs two point. It’s like a it’s like a tablet. It is like a tablet, it’s a touchscreen. It also has tactile buttons on the sides. But it only weighs a little bit over two pounds. It’s 2.02 pounds. So it’s not that heavy. I thought that was like your newest one. Right? Is that your is the Ruby tenant? Correct? Yep. And that’s got some really cool functionality. It just launched more recently.
You know, it’s touchscreen, like I said, it also has text to speech capability. So it talks
it does the text to speech means or is there some other term?
So OCR, Optical Character Recognition. So those two things kind of get tossed around in the industry.
Does that Southern to the all the rubies? Read aloud?
They do not. So the Ruby 10 is the only one that does Gotcha.
What’s the what’s kind of a price point? Sounds like these things are workhorses. talk to folks about what would they need to think about investing in this to start,
you know, it really ranges but you’re starting out, you know, somewhere around, say $700 Okay, and so that’s gonna be kind of your entry point, I would say
I’s electronic. So it’s like a, like a phone is more than that.
It is electronic. And it’s a powerful product. I mean, it does a lot for you. And you know, and then you’re looking at on the Ruby 10. It comes in two flavors as well. So you can do it with speech or without speech. And for that your, you know, retail price, you’re probably around $1,800 for the Ruby 10 with speech, which is, is going to be the top notch version that has all the functionality built in there. You’re right at that price point.
Right, right. But the point is, like you said, the one this guy, the person took you there was like, been through the wringer lasted a long time. And, you know, brought it helps. Let’s face it, what our message really is is it’s not about price, but we want people to understand kind of where the ranges are.
Ya know, it’s good to know that and I think, you know, I like to say, you know, like the song from the musical Chicago, “When you’re good to Ruby, Ruby is good to you.”
Ruby takes care of you. So take care of your device, you know, it’s not, you’re not going to be tossing this thing around. But they are very robust, they’re very powerful. And I can’t tell you how many people love them. As you progress through the sizes, as well, you know, the five point guy, excuse me, the 4.3, when you jump up to that five inch one, you actually get a nicer angle of the monitor too. So that screen sits at a nice angle so ergonomically, it’s more comfortable. And it does have a built in screen, but it also sits nicely on top of your magazine or newspaper or your meal, right.
So it has a tray, like stand and it’s also built. So you know, what I love about these segments is that I feel like you know, you can’t, it’s really hard to for, for, to learn everything about something in one shot it is, but I love that you have covered like, you’ve covered the basics. And what we really want to try to do folks with MyMacDLife is, be a resource, be a resource, be an inspiration, every to every set, every episode we do. We hope our listeners think, Aha, I didn’t know that. Or you learn something that you didn’t know before one or two things. And you’ve covered this in a way I think that helps people understand that there’s some some tool out there in the Ruby family that could work for them. That’s my takeaway is.
Absolutely. And I think that you know, they can check out your website, The SupportSight Foundation is phenomenal resource to have all this information where they find more about it. Yeah, you’re welcome. And, you know, if you want to learn more about the Ruby family, we have some online webinars that are available, we’ve actually shown the functionality. So if you really want to dive in deep, and watch an hour long session on what the rubies are, listen, it’s an mp3.
Where can they find those, Mike?
You can go to FreedomScientific.com FreedomScientific.com And then if you go to our training page, from there, you’ll be able to find all of our pre recorded webinars and also our live events that we host.
And you know, that’s important for because resources are critical. That’s that’s the impact that that MyMacDLife makes and wants to make. And in every episode and everything we do, and whether you’re a caregiver and you’re listening to this or you know, meaning daughter, son and your loved one has is losing their vision because of macular degeneration. You know, go online, go to the sources, they’re credible, and the and, and do some digging around, do further research. We hope we’ve inspired people to do that. And I want to thank our friends again at the sparrow. You’ve been with the foundation for a long time and supporting our patient education programs. We couldn’t do it without you and this segment on MyMacDLife, there’s ten season, and they’re evergreen and you do a great job on these.
Well thank you Dawn. I appreciate the invite and happy to be here to share some great information.
And Ruby family by Freedom Scientific, and their portable electronic magnifiers or hand electronic handheld magnifiers it’s a place to start. It is it really is the fantastic spot to start at. I mean check them out. And I’m sure you’ll be happy everyone loves them they always do.
Thanks for being with us on MyMacDLife, the podcast with a vision to bring hope, optimism, perspective and education to our listeners. For more information and many great incredible resources. Visit mymacdlife.org This program is supported by amazing listeners like you. Please consider a donation to keep our mission moving forward. Remember to subscribe to this podcast on iTunes or wherever you get your podcasts. Until next time, keep living with hope.
MyMacDLife podcast is generously supported by Regeneron