Transcription excerpts from this episode

00:36*
Hello everyone and welcome to MyMacDLife. I’m your co-host, Shawn Doyle, professional speaker, trainer, and book author, and I’m here today with my co-host the lovely and talented, the amazing, the incredible, the irreplaceable, Dawn Prall, the founder and Executive Director of The SupportSight Foundation, and a visionary.

00:56
We’re happy you’ve joined us. We’re excited to bring you some great information, education, and inspiration. We really want to make a difference in the life of people who are suffering with MacD, and we call it MyMacDLife.

01:30
I’m really excited about our guest segment this episode for a lot of reasons. But I’m going tell you the main one, AMD Central, AMDCentral.org. Brand new website, brand new resource. If you’ve got macular degeneration or someone you know, you got to go there and you got to share it with everyone you know, because our guest in this episode is Ilana Yellen. She’s going to tell the audience about herself and her role in making that happen and bringing this to the fore. It’s really important, so stay tuned and listen in because this is where we’re going to give you all the nitty gritty.

02:38
Support for today’s MyMacDLife podcast comes from Healthy Vision Association, Novartis, Prospero, Centric Bank, and Heiko Stein and Associates.

02:52
Our guest today, Ilana Yellen, was integral in making this happen. She’s joining us and going to tell the story. Hi, Ilana.

03:05
Hi, Dawn, thanks for having me.

03:07
We love having you here. So, you heard the introduction, spelled out the URL or the address online, AMDCentral.org. We’re going to tell folks about what AMD Central is, and why they need to check it out. Ilana, would you tell our listeners what your role is, what you had, what you did, who you are, and just give them a little introduction to you.

03:38
Yes, great to be here. I work at Evoke KYNE, and we are an award-winning communications agency – have to put that plug in there. We use our insights and experience and creativity to really advance the health and well-being of people around the world. We have a lot of experience working with foundations and nonprofits like The SupportSight Foundation, as well as those that were also involved in creating AMD Central, as well as government organizations and a lot of big pharma companies and biotech companies to address some unmet health issues. We help them create programs that achieve change. We use our passion to break down barriers and delivered tailored programs that meet our clients’ goals. We do a lot of communications which can involve writing different pieces, creating videos, creating different graphics, everything in between to make sure that patients can easily understand healthcare related information.

04:41
You are experts at breaking things down in a way that lay people, in a way that patients, in a way that consumers, can better understand them and benefit from them. Is that correct?

04:56
Yes. I think that’s one of the one of the many things we do is really help create different kinds of materials and communications pieces that an average person can understand to make sure that they’re getting the information that they need.

05:11
It’s complicated. You work with pharmaceutical companies and organizations like The SupportSight Foundation and others, who are real advocates for those patients, correct? So, let’s dig in a little bit and tell people some background. One of the things we do on MyMacDLife is we want people to better understand that there’s a lot that goes on behind the scenes, there are all kinds of people out there who are working really hard to help them know more about their macular degeneration, to understand more, to learn more, you know, that’s the purpose of MyMacDLife. That’s the purpose of what AMD Central is.

I have to tell the audience that I was involved directly in the project, I’m very proud and happy to say, because we knew that there was not anything else out there like this. We knew that we had to do it. I’m going to start off by explaining to people behind the scenes. This is a collaboration, which makes it really unique and exciting, of key macular degeneration organizations who provide patient education, who worked really hard on funding the research to find a cure, or new treatments for macular degeneration. We’ve never come together before, like we did with this amazing collaborative project. So, it’s pioneering in that regard. Other diseases that some of our listeners may suffer from or live with, like heart conditions, or arthritis or other diseases, that nonprofits and the organizations in those spaces have done similar things, but we’ve never done it for macular degeneration, or MacD as we call it. So, this was the first. Tell folks what it was like for you to work on this collaboration.

07:16
Yeah, it was really a good experience. I’ve worked with bringing together different organizations before to achieve a common goal or create a different product or project or whatever the case might be. But this was my first really in working with organizations in the ophthalmology community. So, this was really neat. We got to learn a lot from each of you about the different things that you work on and the community that you serve. In that way it was great and a good learning experience. John, as you know, The SupportSight Foundation was kind of the driver I would say in in some of this. In taking somewhat of a leading role though all founders put in equal input and contributed resources equally and everyone had a say and vote in what was going on and how the website ultimately developed. We worked with The SupportSight Foundation on this project, BrightFocus Foundation, MD Support, Prevent Blindness, and the American Macular Degeneration Foundation.

08:18
And by the way, we’re going to list all those organizations on our website, MyMacDLife.org so people can check this out. Here we are, we’re all collaborating. We’re bringing these expert organizations to the table, and really developing a partnership. That’s the scenario that we want people to understand because I think a lot of consumers a lot of people out there think we do that anyway, but we really don’t.

08:45
So AMD Central was really the first of its kind website. I think this collaboration between these organizations, was also a first of its kind experience, in that you all came together for this common cause.

08:58
Let’s break it down about what AMDCentral.org is.

09:02
AMD Central, it’s a website. It’s an online resource, and it curates trusted information and support tools from leading patient advocacy organizations, as Dawn mentioned, the five that we just went through in one convenient accessible spot that helps people with AMD really live their best lives. Everything’s just all in one place to make it super easy for people to access. The site itself is designed with their needs in mind in terms of functionality, colors, font size, everything is really tailored to people who have vision loss issues.

09:48
One of the primary goals was to make it easy and accessible. We get calls all the time on our Karen share hotline from people who don’t know where to go once their retina doc or their ophthalmologists has said, you know, ‘Look, we see some drusen,’ or, ‘You’ve got macular degeneration. Unfortunately, there might not be anything we could do about it.’ Which makes me cringe when I hear people tell me that. But this is their next step. The reason we created this was because it’s devastating, and many of you listening have had that happen; so now what do I do? So now this resource is out there on the internet, the resource is out there, you can look at it. Is the doctor going to tell them about that?

10:39
The hope is that there will be doctors being able to promote this website, in visits with patients and potentially in other ways. You mentioned it can be very overwhelming, you just don’t know where to start. There’s so much information out there, and how do you know what’s the best or the right information for you? So, we’re hoping that between podcasts like this, where the word can get out to everyone, and yes, through doctors, it would be great that they can share this news with their patients and direct them at least to the website. Patients and, their loved ones who helped care for them, because that’s really important.

11:11
That’s right. And caregivers, because I mean, if you can’t see your computer, or you don’t use your computer, how are you going to access that? Well, through a caregiver, or a loved one, a grandchild, a son or a daughter, someone who can help you, who could read the information to you, who could check out the resources that are listed. By the way, let’s talk about that. It’s simple to use, and easy. It’s not bogged down with all kinds of stuff people don’t need, what’s the Starter Pack?

11:41
The Starter Pack is something that we develop for people who might be new to the AMD community. There are some key pieces of information that help you manage and understand the disease a little bit more and kind of cover a range of different things. So, starting out with some basics about what macular degeneration is-

12:02
Do people download these? How do they get them?

12:05
Yeah, so you can click on them, there’s links on AMD Central on the Starter Pack portion of the website, you can click on them and download them or some of them are audio clips you can listen to as well or watch on a video if you’re able to do so. It’s something that’s really easy for anyone who’s visiting this site to access. Again, spans everything from some basics about MacD, as Dawn, I know you’d like to call it. Then some other things about you know, more practical tips, perhaps about foods to eat for better vision home modifications you can make how you stay motivated when you’re having a rough day with your vision loss, things like that just kind of some basic information for anyone who’s new to this journey.

12:48
This is trusted and credible. I mean, this is kind of like four out of five dentists recommend, right? This is all of us coming together and saying, ‘look, these are the basic things you need to know’. I mean, you’re not going to change the Amsler grid, we all know there’s wet and there’s dry MacD. This is basic information that’s reliable. I think that’s the thing that I really want people to understand is that we’re empowering people with accurate information.

13:18
Yeah, all this information comes from trusted organizations, and experts in the field. So it’s all vetted and truthful. It’s been hand-picked and selected, we went through many, many, many materials to really pick the best from each organization.

13:37
The more you understand about the disease, the more you understand about what you can do for yourself, empowering patients, empowering them with knowledge and information. Because once you’re diagnosed, or even if you’re already have been living with macular degeneration for a few years, this is still information that you may or may not know.

What was the most challenging thing to bring all these groups like SupportSight Foundation and others together? How was that for you? What was challenging about that? And what was the most fun? I’m going to ask you two questions.

14:12
I think it’s just making sure that everyone’s voice is heard and that we acknowledged everyone’s feedback and incorporated it as much as possible into the website and developing it. Of course, there’s constraints when you work on any project, sometimes money, sometimes time, sometimes different opinions, and you want to make everyone happy, of course as much as you can. I think that’s sometimes the challenge is making sure that everyone is happy. And for a perfectionist like myself that really weighs heavily on me and wanting to make sure we have a good product that everyone’s really proud of. In terms of the most fun part of working on this, as cheesy or as cliche as it might sound, is really working with and meeting different people and getting to work with these different organizations who are clearly really passionate about helping patients and caregivers and this vision community at large.

15:13
What did you learn that you didn’t know before about macular degeneration?

15:18
I’ve always known vision loss to be an issue that some people face. I think I just didn’t realize the breadth at which it impacts your life, which I know might sound silly to listeners who obviously are very well informed about exactly how vision loss can impact their own life or a life of a loved one. It’s not just you can’t read a book, or you can’t watch TV. You’re thinking about how it impacts your cooking, and your daily activities, and your work, and interacting with your loved ones. All different things that I don’t think I really acknowledged in full until I went through all the different materials and information that’s out there. And, from talking to each of the founding partners about their experiences, working with people in the community.

16:06
It sounds like it had a profound effect on maybe something we don’t necessarily think about every day, like I do, like people are suffering from macular degeneration.

16:17
It just makes you very aware of things. I mean, dealing with this in my own in my personal life, not with vision loss, but with a family member who also faces some health challenges. And as a result, is in a wheelchair. There are things that just, kind of like this project, I never knew until I was in that position and seeing it myself, and experiencing it myself, and challenges that she’s had to overcome as a result of needing some extra physical support is this very similar to working with people who have AMD. Now I go to websites and automatically look to see, ‘do they have an accessibility feature where we can change the way you know, font is displayed and, and color alterations,’ and things like that, that I really had not thought of in full before.

17:03
It raised your awareness. That’s really, at the end of the day, folks, that is really what this AMD Central is all about is raising awareness. You also got something from this experience in that it impacted you in a way that you never thought of. I always say, ‘lose your vision and you lose your connection to the world.’ It’s precious and it’s something we all have a degree of understanding about, even when you need your new glass, a new prescription, you can’t see right. If you don’t even have an eye disease, it’s just your everyday life, right?

17:42
I wear glasses to for distance. I know that seems you know pales in comparison to losing your vision altogether.

17:50
MyMacDLife is empowered by The SupportSight Foundation. The SupportSight Foundation is a founding partner to AMD Central. I’m very proud and humbled to be part of that and to be in this group with my esteemed colleagues. I can’t say it enough. Thank you to all of them and their hard work. Thank you, Ilana, to you and your team at Evoke KYNE. The call to action here is, tell everyone you know, AMDCentral.org. Go to it, check it out. We’ve gotten a lot of social media on it, go to the website, and you’ll see all the various organizations who are involved in it, check them out, click on them, learn more about them, because they are champions for you, and champions for the disease and champions for education and patient education. I can’t say that loud enough from the mountaintop.

18:49
AMDCentral.org. It’s a really wonderful resource for this community. Hopefully they will, no pun intended I guess, open your eyes to what’s out there and get the resources that you need to just live your best life with AMD and overcome the challenges that you might be facing. I think all the partners that were behind this did a great job at bringing the website together. So hopefully you can learn about them as well. There is a contact page where you can reach out to the AMD Central founders with a question, an idea, an suggestion, just want to drop them a note to say hello, feel free to do that. But we definitely encourage interaction from community members. I think that’s an important part of the site is that it’s there to serve you. So please let us know your thoughts.

19:36
I’m going to go ahead and get a plug in for Evoke KYNE because I can’t think of any other organization that I would have wanted to work with on this important project. You guys are amazing. What else are you doing out there?

19:50
We have recently wrapped another project in the ophthalmology space, it spans a few different disease areas or has since its inception. It’s called this STEP program. The Solutions To Empower Patients program. It’s sponsored by Novartis and actually The SupportSight Foundation is one of the recipients of recent funding through the program for MyMacDLife. That was one other thing that we did in the ophthalmology community, there was a call for entries for innovative projects. MyMacDLife was one of the ones that was selected as well as one from one of the other actual AMD Central founders, AMDF, as well. Kind of paths crossed, unknowingly, small world, small world there. We got to work in supporting the ophthalmology community in that way. But right now, the company of Evoke KYNE is working on many, many projects across many different disease areas. If anyone is interested in learning more about what we do, we can check out our website to EvokeKYNE.com for some more information and case studies and good stuff, and you can contact us as well.

20:57
That’s great. Well, thank you for joining us. Thanks for taking your time and thank you so much for helping to build AMDCentral.org.

21:06
Thank you and thank you for having me, it’s been a really fun experience.

21:21
This program is empowered by The SupportSight Foundation. The SupportSight Foundation mission is to save sight for millions of people who suffer from age related macular degeneration, AMD, and lose their process vision. As a 501c3 public charity, our goal is to provide patient education and access to low vision resources to help individuals, families, and caregivers whose lives are severely impacted by AMD. We place a high priority on connecting with people, their families, and loved ones who live with the daily struggle of impaired vision. The SupportSight Foundation funds innovative research projects conducted by the top scientists in the field who are on a path to discover effective new tools, technology, and treatments for people like you with vision loss. The SupportSight Foundation, www.supportsight.org, or call us at 888-681-8773 and connect with us on social media. Thank you.

22:36
Here’s a practical tip for living with macular degeneration. Learn to use your eyes more efficiently, learn to use a more peripheral part of your retina to see more clearly.

22:47
You know what that really means, Shawn, and this is important because MacD is a central vision disease, right? It’s really the center as our listeners know. You see with your eyes, you see with your brain, so you can train yourself to look through the peripheral part of your vision, so to the side, or train your eyes to move to the side, or move your head. So, if you’re speaking with someone, or you’re looking at something, you might want to reposition your body until you learn how to do it only with your eyes. So again, just like everything else, that takes practice, you really can teach yourself how to do it, as well as ‘ears for eyes’.

23:33
Yeah, Dawn, when you say, ‘ears for eyes’ what does that mean? Because I think that’s a really powerful points that tell our listeners what you mean by ‘ears for eyes’.

23:41
It’s pretty simple. Ears for eyes means get books and magazines on tape. There’s an incredible audio library available. There are all kinds of audio books available through Amazon and iTunes and all that jazz. I’m sure folks out there are doing that. Also, there are gadgets out there like talking watches, a lot of people have trouble seeing their watch days, clocks, talking scales – although I don’t know that I would want to use one of those. But anyway, talking glucometers, all kinds of things that use that text to speech technology. So that’s really ears for eyes. You can do that, at any point of your vision loss. Whether you’ve just started to lose your vision, you know, your eyes get tired. So use your ears

24:34
I have often thought about how fortunate we are in the modern world that all these things are available to us.

24:40
That’s right. Everyone out there remember ears for eyes and try to train yourself to use your peripheral vision.

24:55
The best part about talking about AMD Central is getting my colleagues together; two guys whom I have so much respect, and friendship. I’m just honored to be in the club with Matt Levine from AMDF, which is American Macular Degeneration Foundation, and my buddy in Kansas City, Dan Roberts with MD Support. We’re chatting here sharing a little bit with you about why we all got together, literally, and created AMD Central, because each of us is a founding partner. When you do something in collaboration, that means working together. That’s not always easy to do. Let’s talk about how we created this. You go first, Matt.

25:48
I just want to take a quick walk down memory lane, because we all do know each other. We all have worked together in various capacities in the past. I want to join the Dan Roberts fan club along with you, Dawn. My first encounter with Dan was when, many years ago now actually, he reached out and said, ‘Look, I’m trying to do this online conference for low vision.’ It was really a new use of technology at that time. He was trying to create a virtual conference before there were virtual conferences. I was working in a different foundation at the time, but it was an amazing concept. There were rooms to visit, he created a virtual conference, we participated. So that’s my first encounter with Dan. Over the years, literally, whenever you’re in a group of people talking about macular degeneration, and needs for people with it or affected by it, Dan’s name comes up, ‘Well, you know, have you checked it out with Dan yet?’

It’s true that we all did have to come together on this. Even though we’re friendly and work together, in my mind I thought, ‘Wow, what a great idea.’ But I also simultaneously thought, ‘Wait a second, how is how are these organizations that we’re going to each contribute to something that will, in its sum, maybe offer something better than each of them individually offers?’ But the reality of it is all of these organizations are there for patients. That’s our focus. So, we set aside any bit of our competitive natures with what we’re doing creatively, or however you want to measure our competitiveness. We’re really all there for patients. That’s I think why we all joined. We created this really incredibly powerful tool that will only grow, I think.

27:40
AMDCentral.org. What do you have to say about that, Dan? I mean, we’re talking mutual admiration society here.

27:50
I’m thrilled that Matt mentioned that we had met before because now I remember. I felt a little awkward saying we had to work together now I can be honest about. We did work together, didn’t we Matt?

28:02
We did. I think we were introduced through Ellen Troyer.

28:04
Yes, yeah. She was a wonderful person; she still is a wonderful person that ties us all together. I want to ask the interviewer a question, and that is, how did you get started with this? I have a feeling you’re not going to say anything unless somebody asks.

28:21
Thank you for that. Five or six years ago, I realized that I’ve been in this business for a while, long enough to understand to get my arms around it. Met you, Dan, we had to fly to Chicago to meet each other, talked on the phone, had some ideas about how we could work together. Matt, of course, I knew from other conferences and things to where I thought to myself, ‘This disease is bigger than all of us.’ And quite frankly, I’m a little tired of not being able to work together in a way that really serves, as Matt said, the public the patient, education, the caregivers, but what can I do to lead by example? Because I knew that The SupportSight Foundation, formerly MVRF – we’re lean and mean and mighty, we’re purists it’s all we do – like both of your organizations by the way, but we can’t do this alone. So, I had this idea of collaborating. Then about a year and a half ago, I was in a situation where somebody with some funding said to me, and this is it honestly, but he said, ‘What can we do for you? What do you want?’ And I said, ‘Are you kidding? You’re asking me that.’ Then that’s when I told him and that was the beginning of it. We made it happen together. I couldn’t be more proud of it and more excited and we worked for the last six months to get it done, the two of you and the other founding partners, and it was fun.

30:06
I also want to point out that I think some of this was already happening organically. I think each one of our organizations, from time to time, when contacted by someone with a request for information or a need, if any of our organizations couldn’t fill that need, we always refer to reach out. We would always say, ‘It’s better if you go here, this is their focus, this is what they do.’ Like with Prevent Blindness doing nationwide surveys, we don’t really offer that, we offer more interpersonal information stuff we don’t offer support groups. So, we always say, ‘Go to them.’ I think this was happening. But to have it all together in one place, is really great.

30:50
Tell folks about why they we built it for them. We built it for others. What’s our advice? You go there and what do you do?

31:03
This website, AMD Central, has a wide range of resources. That alone is what sets it apart. It’s got clinical details about the condition, has got practical advice for living with it. It was developed with the accessibility needs of the community in mind, it’s a very friendly site. And again, that’s because of the creative ideas of all of the founders. The visitor can actually change the display settings to suit their vision and their needs. It’s available both for desktop and mobile platforms. A lot of the resources are available in trance and audio. I just can’t think of anything that we forgot about. We even have some materials in Spanish. We’ve reached out to the Hispanic community as well.

32:02
That’s awesome. Dan, thank you for that. The Starter Kit, Matt, do you want to talk about that? Let’s add something in that that we also want folks to know that we haven’t mentioned.

32:14
Well, first of all, because there is so much information there might be hard to even though the navigation is really elegant that you can sort of very quickly get to the particular kind of information you want. But there is so much that there was a Starter Kit, we give you a little sampling of what each organization has to offer. That way you get a flavor for which way you might want to go, and you might get exposed to some information you hadn’t thought you needed but then realize you did. I think another thing that ties all this together is the element of trust. Because each of these organizations came into being solely for the purpose of improving the lives of those affected by macular degeneration. Each one of them is a trusted source of information in and of themselves. When we all came together, we each vetted all the information that’s on there. So, it’s like double vetted trusted information. You’re not going to a website, which at the end of the day is actually trying to sell you their nutraceutical. That’s not what we’re doing. We’re just giving you unadulterated essential information.

33:24
That’s a really great point. So, let’s sum it up guys as we wind this down. This has been an awesome conversation. I love spending time with both of you, you know, I’ve never actually spent time with both of you at the same time. So, this is exceptional. Winding it down, summarizing for folks who are listening, AMDCentral.org. Go online, Google it, whatever. Click on it, join us, visit, share the news with everyone you know, email it out to folks, talk about it, go online. It’s trusted, credible information from the founding partners who worked tirelessly in the last several months to create it just for you.

Think about it like this, four out of five dentists recommend. This is the source. That’s kind of the gist of it. It’s meant to be a place where you can go and feel safe, as Matt said, feel that the information that you’re either downloading or reading or sharing has been vetted, vetted, vetted. The spirit of it is inclusive, the spirit of it is concise and easy. That was the goal. Send us your information, ask questions, engage with us. We encourage that, and we want that relationship. Dan, why don’t you add to what Matt and I summarized, then we’ll do a closing cheer. You know me, I usually say toasts. Now I’m saying cheer because it’s the afternoon.

35:14
My dear days of doing flips are over though. So, the cheer, I might have to leave out. I just wanted to mention that not only can they get information from this site, but every one of the resources has a link to each of our individual sites where they can go and expand upon that. Let’s not forget that we all have our sites too. We’d like to have visitors there as well. They can go back and forth to all of the sponsor sites, and they will be able to leave knowing that they’re not being left out of anything.

35:57
Good point. All right, guys, I want to say thank you, on behalf of The SupportSight Foundation, for everything you do for everyone else out there, but in particular in your collaborative work with us. I want to say thank you on behalf of MyMacDLife, for joining us today and taking time out of your busy days. I really had a wonderful time with you this afternoon.

36:45
One of the special features of MyMacDLife, as many of our listeners out there know, is that there’s a lot of work behind the scenes. MyMacDLife is empowered by The SupportSight Foundation. The SupportSight Foundation is a 501c3 public charity whose mission is to save sight for millions of people and families who suffer from macular degeneration. As a nonprofit entity, behind the scenes we have these amazing people who have committed time, treasure, and talent to the foundation and to ensuring that the resources the foundation has are put to good use, ensuring that the mission of the foundation – to change lives and transform lives through science and through patient education and all the program we do like MyMacDLife – that it happens with integrity, with love, with creativity, and with positivity. It is my distinct pleasure – as many of you know I have the privilege of being the founder and executive director of The SupportSight Foundation. One of the things that’s really important is that you know our board members, and you hear from them. It’s my privilege to have Dr. Robin Smart. Welcome, Robin.

38:16
Dawn, I’m really glad to be here. Thank you for allowing me to talk about something so very important and near and dear to my heart.

38:24
You got it. You know what, we’re just happy that you feel that way, actually, and that you’re with us. One of the things we try to do with these discussions, these conversations, is to dig in a little bit. You know, the unique part of MyMacDLife is that it’s about stories. And it’s about all kinds of stories, whether it’s patients with macular degeneration. I want to start our conversation with a couple things to think about and share with the audience. You are Dr. Robin Smart; you are a Doctor of Education. I happen to know that learning is your lifelong passion. Could you share with the audience a little bit about you and why you chose that path, and then circle back at the end, if you will, to how important education is to the disease, macular degeneration, and learning to live with it.

39:29
Dawn, as you know, I am a lifelong educator. I grew up in the city of Philadelphia, I grew up with a single mother, a loving family. I spent a lot of time with my grandparents. My grandparents, unlike me, did not have a lot of formal education. Each of them were educated up until the eighth grade, but they were the wisest, smartest people that I’ve known in my lifetime. Education was primary for them. They were determined that, not only were their nine children going to be well educated, but also their grandchildren. I spent the afternoons with my grandparents, along with my sisters, while my mother worked a second job. My grandfather taught me how to read; reading was really, really important. I say he gave me literacy.

I used to walk to a park with my grandfather. At that park, my job was to read the Philadelphia Daily News to the local neighbors, mostly men gathered around. They were really pleased, right, that a little kid – my grandfather was proud because he was my first teacher – that a little kid could read, right? Not necessarily understand what I was reading, but I could read those words. And here’s why this is important, because everything comes full circle, as I learned, to read and I shared literacy with people who perhaps some of them, maybe couldn’t have read the newspaper independently. My grandfather was really pleased to be able to share that. But also my grandfather had MacD.

41:25
Wow, your grandfather had macular degeneration. Did he know what it was back then? Did they name it?

41:34
He knew some of what it was. No, he was really in tune with what was happening on a very basic level to his eyes and sought as much information as he could about it because he wasn’t necessarily the only person who had MacD, but other people in my family, some of his children, including my mother also had MacD. But my grandfather, who gave me literacy eventually lost his sight.

42:06
That’s really a compelling little vignette. Because here you are a little girl, Philadelphia, in the community, African American community. Could the men read?

42:15
Many of them could but some couldn’t, right. It was about access, and awareness, and leveling that playing field for everyone.

42:26
So you are bringing them joy, by reading at a young age, and your grandfather was joyful, because he was your first teacher and brought you literacy. And then here’s these people around you, who you probably thought they were old, right? Right. Did you know that he couldn’t see when you were in the park reading to he and his friends or did that come later?

43:00
I learned that over time. I recognize my grandfather was a very deliberate and organized person. I remember recognizing that he kept his money, his dollars, in order like $1 bills and $5 bills. He was very meticulous with things like that. Things in my grandparent’s house were in particular places, there was always order. I learned over time, he used to say he had bad eyes.

43:31
Wow, I’m sure a lot of the of our audience can relate because when you can’t see you need things in a particular place. They need to be exact and precise because that’s how you find them. That’s how you know where things are. He was coping with this vision loss. Did he hide it, Robin? Did he talk about it?

43:56
I remember my grandfather referring to his vision loss as his eyes were going bad. One of the things that I think he regretted was the fact that he could not read independently, he was a voracious reader. In fact, when I was in college, I used to come home once a month. What I would do over that weekend is I would then read to my grandfather.

44:25
Wow. So, you were his eyes. You were his voiceover. You were his read aloud. That’s awesome because we often talk about how important it is to have someone, a loved one, a family member, someone in your life who is your eyes and that’s not an easy role to play. But it sounds like because you loved each other so much and you were together a lot, no matter what, that that just came natural for the for the two of you.

45:00
We were a big family. One of the things that I also remember is that there was always someone there.

45:07
There was always someone around. You know, macular degeneration impacts the entire family. Period stop, right? You’re a living witness.

45:15
He didn’t just lose his vision. We all lost something, you know, we all were affected by the impact of the disease.

45:26
So it was a ripple effect. Is that right?

45:30
Absolutely, for decades. I have uncles that had MacD, my mother, an aunt, and my youngest sister.

45:44
I need to point out to folks that macular degeneration is genetic. It can be hereditary. It doesn’t have to be, there’s varying research, but I’m going to just say this out loud and publicly that there is data that shows that if one or both of your parents has or had it, you’re three times more likely. What you just said, proves that it runs in families. So fast forward, your uncle, his brother, your mother. Now it’s in her generation. Now it’s your sister. Okay, so talk about that, talk about what that was like for you. Because were you scared that you were going to be the next one?

46:38
I was scared. I was absolutely scared as a child and my mother was petrified; I think. She wasn’t scared of many things, but that petrified her. So, if, in fact, you said anything was happening with your eyes, the next thing that you knew you were at someplace with a specialist because she wanted to be certain, and she felt a high level of responsibility for the effects of the disease and the possibility of that in our lives.

47:18
Right, because she knew what it was like, and it’s fear, it creates fear. I mean, we know that they’re the number one fear people have is losing their vision, no matter what, there’s 600 diseases of the eye, but of course, MacD is 20 million Americans. It’s one in four basically over the age of 65. So, it is fearful. And that’s why we do this, that’s why we do this foundation. That’s why we do MyMacDLife. Because sharing your story and sharing that experience, I’m sure there’s a lot of people out there who can totally relate to it.

47:53
My sister found out as when she was a teenager about the possibility as she started having some challenges with her sight, thinking about, you know, we all imagine what our lives are going to be like. She had to begin to reimagine what her life might be like and to prepare, given the experience of many of the people in our family, prepare for the possibilities and to learn as much as she could about the disease and how it might impact her and how it has impacted others.

48:39
And living life with vision loss. Was that Stargardts, juvenile macular degeneration? Wow. This is why your leadership, and I’m so grateful for it by the way, if I haven’t said that already, for your leadership on the foundation board, your experience and your knowledge as an educator, your leadership as a leader. I know that sounds kind of silly, but you know. What do you want to tell people who are listening based on your experience personally, and now as a board member, is the most important thing that they need to understand about this disease?

49:30
So Dawn, I first really want to say that I wanted to be a part of your board because of the importance that everyone, from every capacity of life and life-standing, is educated about this. MacD affects so many people, young and old, and as someone who believes in education as the great equalizer, who believes in research and the positive effects and outcomes that research can have on the lives of people, I am committed to working with you and the foundation because you have a commitment to changing the lives of people with MacD for the better.

50:17
You give me goosebumps. Oh, I’m serious, this is so incredible. So, let’s swing it a different way. This is my thing I’ve been doing lately, by the way, so it’s not just you. By the way, folks who are listening, Dr. Smart has no idea I’m going to ask her this question. That’s the beauty of it. If you had five minutes with anyone, and it does not matter what you’re doing, past or present, who would that be?

50:58
My grandfather, full circle, to say thank you because of the trajectory that he began in my life, which allowed me to change the lives, and impact the lives, of so many others.

51:14
You know, I have bigger goosebumps than I had two minutes ago. Oh my god, I love it. So other than what you mentioned earlier, why is being on the board important to you?

51:29
Because this is real, because of the authenticity. Dawn, to be honest, because it starts with the leader that you have shown since I’ve known you. Your commitment to this, I mean, the first few words, when I met you, that you said to me were about this. I know that you’re in it for the long haul and that you will give your all to make sure that you can positively impact and change the lives of all of these people who need someone like you to be a champion for them.

52:18
Well, thanks for jumping on the ship with that, because we’re sailing. And everybody out there needs to jump on board.

52:25
Absolutely, give their time, talent, and funding to this because it’s important.

52:30
What’s your final thought about all of this and about the future? Just your final thought in this conversation.

52:35
I’m so glad that I’m here, Dawn. I’m so glad that I have an opportunity to support in a way that can help. I know that there are many people who are out there who need the support, who need the care, who will benefit from the research. I just hope that there’s something that we said today that will allow more people to kind of jump on the bandwagon and join us.

53:04
Thank you, Robin. You’re awesome.

53:16
All right. Well, good afternoon. My name is Bill Kilroy. I’m Vispero Senior Sales Director for the Northeast, and I’m joined by my colleague, Mike Woods, Strategic Accounts Manager for Education for Vispero. Mike and I are very pleased to be on this podcast, MyMacDLife, and we hope to tell you a little bit more about our organization and the types of tools we produce. Vispero is the world’s largest Assistive Technology for the visually impaired. Our field of specialty is Assistive Technology. In our world, for Vispero, that means serving people with our products who are blind or low vision. Throughout this podcast, we hope to highlight key products in our line that can enhance people’s lives and we look forward to speaking with you.

The tool that we’re going to focus on today is basically a pocket-sized device, Mike, it’s our comp from our Optelec Division, which is one of the several brands that is under the Vispero umbrella. There’s Optelec, there’s Freedom Scientific, there’s Enhanced Vision, those are the low vision and no vision manufacturers. And then we have a services unit, the Paciello Group, they work with companies and consult with them to make their tools, their websites, their application that they’re developing more accessible so that you know more people in the community, regardless of ability, can access those types of tools. We’re giving you physical tools that you can put in a shirt pocket or a carry with you that in this case, the Compact 6, it’s a portable video magnifier. You can put on your desk in front of you, that you can magnify a document anywhere, from, I want to say two to 24 times gives, you upwards of three hours of battery life, which doesn’t sound like a lot of life if you think about it. But it’s for spot reading, it’s something that, think of this as a magnifying glass. But instead of holding one fixed focus, magnifying lens, you’re holding 30 or 40 of them. I can walk over to the thermostat, and I can raise or lower the temperature in my home very easily. I can take somebody’s business card while I’m out shopping and I can quickly look at that, filling out the keynote numbers for myself at the restaurant after I’ve viewed the menu. And I’m filling out the numbers that I want to do with Keno, that’s probably a bad example. But we don’t encourage gambling. But those are some of the activities that you might do. But you know, what I love about the Optelec line is they do a great job in sort of the look and feel of the device. There are a lot of magnifiers out there, handheld, electronic magnifiers. But these guys, they use a touchscreen. It’s like having a mini mini mini iPad in front of you. You press the screen, and you can raise or lower the magnification, you tap an icon for high contrast, and you can change your color combination so that you can view the information that’s more tuned to your eye condition. If you need high contrast, white on black, black on white, yellow on blue, those types of things. It’s all built in. And again, the versatility is great. Because when you’re done with it, put it in your pocket, or put it in your purse, your backpack, and just on to the next place.

56:59
The one thing too, Bill, I think with the Compact 6 that I really like, is it super high tech. The high-tech part of it is it’s got that built in Bluetooth capability. If you’re using a Bluetooth headset or a Bluetooth external speaker or something, you can Bluetooth it to that and push the audio out to that, and then the mirror cast. A lot of these smart TVs at home are coming with mirror cast. I had a person that I had demoed this to a couple years ago, I guess about a year and a half ago. He had a large 70-inch flat screen TV and a mounted up on his living room wall. He was able to use mirror cast to push out the image from this Compact 6 to that giant TV screen on the wall and view what he was viewing under the compact on the wall on that 70-inch TV. It’s spectacular. Now you’ve got this huge image of your book or your mail, things like that. And then one of the key things is the OCR built into this, right? Right, you’ve got that capability. And for those that don’t know OCR, optical character recognition, better known as just scanning and reading. You can have this read you the material as well, you can store it on here. So for me, in the education market, it’s spectacular. But across all age groups it’s really flexible, easy to use, and intuitive. I think that’s the other thing, intuitive. You had mentioned the design, I know that gentleman I met out at one of our conferences, was complimenting the fact that on the sides, when you take it out of that reading stand, it’s got kind of indents for your hand, your fingers to hold it nicely on each side. If you are holding it up to something in the grocery store, reading nutritional value things or price tags in the grocery store, or if you’re traveling, you’re reading the bus schedule that’s posted up on the wall, you can do that. It’s nice.

58:48
No, I think you nailed it, the versatility of being able to, not only magnify something, and again, we talked about this, there’s a couple of modes where you can magnify, you can have it in its stand and you can just move it on top of your print material, you can close the stand and hold it up. Again, you can vary the magnification just like you’re holding a magnifying glass. Again, we focus on durability with these units. They’re designed to you know, give you a great image. They’re designed to be extremely easy to use and usable. But we take great care in engineering these so that they can take some abuse, we don’t want you abusing them, we want you to take good care of them, but you treat them well, they will last you a good long time.

59:34
If you want to try them out, let us know. You can always go to www.vispero.com. From there you can be linked to all of the different brands under the Vispero umbrella so you can go to Freedom Scientific, Optelec, Enhance Vision, or the Paciello Group from vispero.com and learn more about these products.

1:00:00
MyMacDLife was created by The SupportSight Foundation to serve the macular degeneration community. This award-winning educational podcast is one of a kind and is an innovative way to strengthen and empower people who are living with MacD. MyMacDLife is made possible by generous tax-deductible donations from people like you. To donate today visit MyMacDLife.org\donate.

1:00:28
Hey everyone, thank you so much for spending time with us today. We’re really glad you’re here. Please come back.

1:00:35
It’s definitely a privilege and a pleasure. Remember, for more information please go to MyMacDLife.org we have all sorts of resources and info there for patients who have MacD and their families and remember to join us next time on MyMacDLife.

1:00:51
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. During the season of giving, please consider a donation to keep on mission moving forward. Remember to subscribe to this podcast on iTunes or wherever you get your podcast. Until next time, keep living with hope.

* Note: All listed transcript timings and wording are approximations.