S1E5: Finding a Cure for MacD – Hear from Top Vision Scientist Dr. Stambolian

We discuss Dr. Stambolian and his research team’s current MacD research. Dr. Stambolian describes how they are taking a new approach focusing research on human eye tissue to better understand what makes a normal macula different from other locations in the retina. Their goals, he says, is to develop better treatments and work on finding a cure.
Published On: March 18, 20210 CommentsTags: ,

Share This Episode, Choose Your Platform!

In this episode…

Hosts Dawn Prall and Shawn Doyle begin the episode conversing about a topic that has been on their minds. This episode, Shawn wonders about the thought process of a person who considers themselves as disabled versus someone who does not. He mentions how people who think positively heal much more often than people who don’t, as well as the impact changing language has on the mindset. Dawn builds on these thoughts by speaking to quotes on how “you are or aren’t what you think about all the time.” Shawn closes out the segment by suggesting people with MacD consider saying they have a condition and not a disability, which causes them to have to do some things differently.

In the next segment, Shawn interviews Dr. Dwight Stambolian, who is an ophthalmologist, researcher and faculty at the University of Pennsylvania, beginning with his medical and research background. Referring to himself as a “physician scientist,” he relates how in medical school he was interested in both research and clinical work and was invited by a University of Pennsylvania professor to obtain his PhD. He then completed his ophthalmology residency and remained as a faculty member since his first appointment. He goes on to explain how he began focusing on MacD in 2000 with clinical research within the Amish and African-American communities in Pennsylvania.

Next, they discuss Dr. Stambolian and his research team’s current MacD research and having recently received a research grant from The SupportSight Foundation. Dr. Stambolian describes in lay terms how they are taking a new approach by focusing research on human eye tissue to better understand what makes a normal macula different from other locations in the retina. He elaborates on how they also are comparing eye tissue from donors with no disease and others who have MacD, to seek differences between the two. Their goals, he says, is to develop better treatments and work on finding a cure.

Shawn and Dr. Stambolian also discuss in detail the clinical trial process to help listeners understand what goes into developing a drug, including length of time, such as for MacD. For example, Dr. Stambolian adds, it can take 10 years of research and clinical trials before a medicine actually gets to the patient. He then outlines the three phases of clinical trials designed to determine the effectiveness of new drugs. They conclude the segment on a hopeful note discussing the many advances in MacD treatments since the 1980s, in addition to the ongoing and continuous research on a cure for macular degeneration.

The podcast continues with the regular featured segment with Vispero, 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 Kilroy, Senior Sales Director for the Northeast, introduces the brand Freedom Scientific’s Topaz line of desktop video magnifiers.

He details how this versatile and easy-to-use line of devices includes a high-definition camera monitor and color-coded control panel with separate colors for each level of magnification and video enhancement mode for changing the contrast. It also has an XY table for positioning a newspaper, book or form for signing directly in front, with the ability to magnify from just under 2x to 60+ in magnification level, depending upon the model. He adds how it is ideal for what he calls long-term reading, so the device can read to you when feeling tired. He wraps up the segment by providing contact information, reminding listeners that Vispero representatives are there to answer any questions and guide you through various products based on your individual needs. They can also connect you with a local resource to assist you in your home; or schedule an appointment for you to visit their showroom and test the devices out.

Other episode highlights include short soundbite segments where Dawn and Shawn enjoy sharing fun celebrity trivia; and provide helpful tips on living more independently with macular degeneration by enhancing contrast between an item in view and its surroundings on the more serious side. The co-hosts close out the episode with information on additional resources.

What We Discuss in This Episode

This fifth episode covers the following featured topics:

“Dwight [Stambolian] is a world-class vision researcher at the University of Pennsylvania whose life’s work, is going to have an impact on all of our listeners in terms of their macular degeneration and what’s on deck for the future and the research.” (1:45)

“Does thinking of yourself as being disabled change things versus thinking of yourself as not disabled?” (5:27)

“My initial MacD research was clinical and focused on identifying MacD families in the Amish community of Lancaster County, Pennsylvania. In that community, we actually examined about 3,000 individuals and found quite a few families that were transmitting MacD through the generations.” (11:34)

“Over the last five years, my MacD research has changed from actually being clinical to more basic science research.” (12:40)

“The collection of multiple MacD stages should enable us to generate a gradient of changes in MacD that manifests early and progresses through intermediate and advanced stages.” (16:37)

“Understanding these changes that underlie this gradient from early to intermediate will lead to new drugs directed at these targets, with the goal of halting the progression from early to intermediate stages. (16:55)

“Before a pharmaceutical company can enter a drug into clinical trials, there needs to be some basic research accomplished, which addresses the biological activity of the drug against the targeted disease. Much of this research is performed in academic centers like mine and is usually supplemented by research labs and big pharma.” (18:36)

“The clinical trials themselves consists of three phases and are designed to determine the effectiveness of new drugs.” (20:14)

“What right now in those labs are kind of the bright light, a possible cure or some new medication in the future that might really benefit those suffering from acting?” (22:25)

“So the exciting news, we now have research that indicates we may be able to reduce the number of injections up to 75% perhaps.” (25:33)

“People all over the world are putting hope in people like you, Dr. Stambolian, scientists and doctors. So what hope is on the horizon for people who have MacD and what do you find the most promising these days?” (26:15)

“How has the pandemic impacted your research and how has it impacted research in general? (28:46)

“Tips to live more independently with macular degeneration. What you have to do is enhance the contrast between what you want to see and your surroundings.” (43:39)

“Today we’re going to be talking about the Topaz. It falls into the category of desktop magnifier. And it’s almost like a PC in… your den, on a desk or on a table. And it’s like a workhorse. It comes in all different sizes, and it’s really easy to use.” (46:21)

“The Topaz OCR is a great choice to have and goes above and beyond with the OCR capability in addition to magnification.” (53:34)

Did you do this, did you do that?

  • Tell your friends?

  • Send us some money?

  • Share on social media?
  • Listen more than once?
  • Subscribe to MyMacDLife?
  • Send us some money?

    (oops, we already said that!)

Take my money
Transcription excerpts from this episode

00:34*
Hello, everyone and welcome to MyMacDLife. I’m your co-host, Sean Doyle, professional speaker, trainer and book author, and I’m here today with my co-host… Dawn Prall, the founder and executive director of The SupportSight Foundation, and a visionary.

00:55
Hi, everyone. 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.

01:28
Shawn, I have something to say about today’s lineup.

01:31
Do you really… who’s on today’s lineup?

01:33
Well, I’m psyched because we have the distinct pleasure and honor of featuring Dr. Dwight Stambolian. And Dwight is a world-class vision researcher at the University of Pennsylvania whose life’s work, is going to have an impact on all of our listeners in terms of their macular degeneration and what’s on deck for the future and the research.

02:00
That’s right. And if you think about it, this is a rare opportunity to tune into a discussion with a world-class researcher. And how often do you get that opportunity?

02:09
You got that, right.

02:10
So I’m really jazzed about that.

02:12
And you know what else? These guys, scientists, have a tendency to talk in science terms. But Dwight’s talking in lay terms today.

02:23
Yeah. And it’s fascinating because his life work is really making a positive impact on our listeners.

02:30
Yeah, I said that.

02:32
That’s right! You did say that. Where was I?

02:36
No, no, you just got all caught up in that science thing.

02:42
Yeah. Also good to hear from our buddies at Vispero talking about some Assistive Technology that is amazing. So let’s rock and roll…

02:49
And a couple other things on deck. But really, it’s all about the research today, folks. So don’t go anywhere, please.

03:06
So Dawn, this is the segment when you and I talk a little bit about what we’re thinking about this week, or this month, or right now, and this is something I was thinking about today, because I have a friend of mine. His name is John Leary. He’s a professional speaker. And he was actually in an accident when he was 10 years old, very sad, where he was burned over almost 100% of his body, and he survived.

So what am I thinking about today? Well, one of the things that struck me was I asked him, ‘Hey, John, how’d you get to be a professional speaker? He said, ‘Well, my daughter asked me to come and speak at her school, because they were having National Disability Week. And she said, ‘Dad, you know, would you come and speak at our school?’ And John said, ‘Well, why would I come and speak at your school? I’m not disabled.’ Now, if you meet john, you realize that he does have quite a bit of disability because of his burn experience, but he doesn’t think of himself as disabled. So one of the things I was thinking about today is, you know, I’m sure there’s people that have MacD that may think of themselves as disabled, controversial, of course. And there may be people with MacD, they don’t view themselves as disabled, like John. So what are your thoughts about the thinking of a disabled person versus somebody who says, ‘I’m not disabled?’ An interesting thought process. So just wondering what your thoughts were about that?

04:26
Hmm…

04:27
I’m not disabled.

04:28
First of all, what an unbelievable story I can’t even imagine.

04:32
I’m very delighted to call him a friend. He’s an amazing man.

04:35
Absolutely. I’d love to meet him sometime.

04:38
He’s incredible.

04:39
And to also have your child ask you that. So that says something as well as to your own child’s perception. And I’m not judging or saying good or bad about that. It’s just interesting. But also know at the same time, we all know, you know, when kids at least were in the classroom, it would be almost an honor. I know I did this with my daughter, ‘Could you come speak to our class and talk about what you do as a professional?’ And that was like, while it was kind of embarrassing for my daughter it was also prideful for for me and an honor—you know, that’s what goes on with kids. But we all know that schools do that.

05:27
So does thinking of yourself as being disabled change things versus thinking of yourself as not disabled? I guess this is what’s kind of rumbling in my head.

05:36
Right. And it’s hard for you and I really actually, you know, kind of be here talking about all that because neither one of us are “disabled.” So on the one hand, it’s tough to answer that, but I understand why it would be ruminating around in your head, because it’s profound.

I would just say this—again, not to be esoteric all the time, or whatever—but you know, I’m going to just paraphrase the quotes. But what you think about all day is, you are or you aren’t what you think about all the time.”

06:12
Absolutely. That’s so true, Dawn. I’ve even heard people say that the word ‘disease,’ if you break it down as the word ‘dis ease.’ So when people think about being diseased, they’re ‘dis eased.’ So people don’t think they’re diseased. So you know, we hear about this all the time about the holistic thinking and how people who think positively heal much more often than people who don’t. So the idea of thinking of yourself as disabled can change the way you the way you view everything, your perception of everything. So just, it’s a fascinating thought.

06:51
It is, Shawn, and I think I love the way you brought it up in the context of MyMacDLife. And I think it’s something that we all need to ponder every now and then, no matter if you were in a wheelchair, or you’re mentally to say—whatever it is. Visually with, you know, of course, macular degeneration. I think that the overall topic is something that we all have to ask ourselves. Because life changes. Things change. You can go from in the blink of an eye—no pun intended—to having your vision and then not having your vision. And I know you can relate to that. So I would just leave it at this, I think that it would be great to hear from the ‘disabled community.’ I have many friends who work in that field, and perhaps we should get one of them to join us on one of our podcasts as a guest and really drill down on that. I think that’d be great.

07:57
I think it’s a great idea. And my only other suggestion would be, I’ve always said that in order to be motivated and positive, you have to change the language. So my suggestion—and, of course, this is just my own personal opinion based on many people that I’ve known—is instead of using the word disabled, say ‘I just have a condition, not a disability.’ So that’s a mindset change, you know.

08:18
Absolutely.

08:20
Say, ‘Well, I don’t have a disability, I just have a condition. I have MacD. That’s a condition, but it doesn’t make me disabled. It just means that there’s certain things I have to do differently.’ Not disabled. So it’s just interesting thoughts. So yeah, I would love to know what our listeners think of that idea. And we definitely need to find a guest to talk about that. So I think that would be a really fascinating topic, disability versus just condition.

08:43
Perfect. Thanks, Sean. Great thoughts.

08:47
Thank you?

08:52
Folks, this MyMacDLife episode includes our special guest, Dr. Dwight Stambolian. We’re thrilled to have him with us today. Dr. Stambolian and his research team at the University of Pennsylvania recently received a research grant from The SupportSight Foundation. So, Doctor, thanks for joining us today on MyMacDLife and welcome to the show. First of all, congratulations on your TSSF research grant award. Bravo.

09:15
Yes. Well, thank you very much, and I’m honored to have you allow me to speak on my research.

09:21
We’re really glad you could join us today. And I guess the first question I’d like to ask for our listeners really is, can you tell us a little bit more about yourself? I’m sure people are curious about, ‘Who is Dr. Stambolian?’

09:31
Sure. Well, I consider myself a physician scientist who has had some lucky breaks during my career to help me land softly into my current position. I first became interested in ophthalmology during my second year of medical school. This interest was piqued by a fellow classmate who was passionate about ophthalmology and some of this enthusiasm spilled onto me.

But as I progressed through medical school, I became confused about my ultimate role after graduation. Was I to become a scientist, or clinician, or both? During my senior year, I decided on both and I was fortunate to meet a University of Pennsylvania professor in ophthalmology, who invites me to seek another advanced degree, a PhD. So I moved to Philadelphia following medical school graduation. And completed my PhD at Penn and remained at Penn to complete my ophthalmology residency. Following my ophthalmology residency, I was invited to remain on the faculty and have remained as a faculty member since that first appointment.

10:55
Well, a quick question for you. It seems like you’ve been very fortunate to have a couple of really influential people through that part of your career that really had an impact on you, in terms of kind of shaping the direction you headed, and is that accurate?

11:07
That is accurate? Yes.

11:08
That’s great. Well, how fortunate you are to have those influences.

11:13
Yes, I was very lucky.

11:15
Shall we fast forward now to your early research career and what happened there?

11:19
Well, during my formative years of my research career, it was focused on cataracts. And it was not until the year 2000 that I began to develop an interest in MacD. My initial MacD research was clinical and focused on identifying MacD families in the Amish community of Lancaster County, Pennsylvania.

11:42
That’s fascinating. That’s actually about five miles from where I’m sitting today for the show. And what attracted you to the Amish community particularly, Doctor.

11:50
Well, it was their excellent genealogy, their large families and their well-known genetics.

12:00
Hmm. Really fascinating.

12:01
In that community, we actually examined about 3,000 individuals and found quite a few families that were transmitting MacD through the generations. This project evolved into studying another ethnic group, African Americans in Philadelphia. Interestingly, MacD in African Americans is much less frequent and presents differently from MacD in Europeans. in that study, we managed to recruit about 600 individuals that had a diagnosis of MacD. And over the last five years, my MacD research has changed from actually being clinical to more basic science research.

12:48
That’s really interesting. So, you know, for the people listening to this program in a laypersons nutshell, tell us about this exciting research project and what’s the purpose of the TSSF grant? And what will your team be doing with the money?

13:03
Right. So before I get to that, let me review some of the issues about drug design for MacD and then discuss our approach to finding a cure for Mac D. Many of the current therapies for MacD have been directed at slowing the progression of the advanced stages with drugs, such as Anti-VEGF. Or, in some cases, surgically replacing the dead cells with live cells. By design, a drug is usually directed against a target that is either disease causing or disease modifying. Drug design now takes multiple years and man hours of research before a drug gets tested in humans. Historically, much of the research into new drugs directed at MacD has been done on animal models, such as mice and rats, that do not have the same eye anatomy as humans.

14:07
So does that experiment on animals become problematic? Because of some of the structural differences in an animal’s eye versus a human?

14:14
You read my mind, that is correct. The anatomy of most of these animal models is quite different. A lot of, like mice and rats, do not have maculi, which is the location in the retina where MacD does its damage. In addition, the physiology of rodent models do not accurately recapitulate the physiology of humans.

14:38
So let me just stop you for one second because we’ve got some smart listeners out there. But what do we mean when we say recapitulate?

14:45
Mimic. Well, let’s use the word mimic. Is not meant to mimic…

14:48
Mimic, mimic the physiology of humans…

14:50
… or reproduce. So many of the clinical trials that are initiated have an incomplete understanding of a drug’s effect in human beings. Adding to this lack of understanding is our limited knowledge about the underlying biology of why MacD develops and its progression to advancement MacD.

So what is different about our current approach to MacD? Well, first, we are focusing our research on human eye tissue to better understand what makes a normal macula different from other locations in the retina. If we can understand the uniqueness of the macula, then it might be possible to explain why the macula is susceptible to MacD. Second, we are collecting eye tissues from deceased donors who have no disease and others that have MacD. Using tissues from both sources, we seek to find the differences between the eyes that are normal and those that have MacD.

16:04
So it’s almost, Doctor—if I may interrupt you for a second. It’s almost like you’re a detective in a way, because you’re comparing and trying to figure out…

16:10
Exactly

16:11
…there’s normal, here’s not normal, and what are the differences…

16:13
Differences, yes.

16:15
Why are they different, right?

16:16
Correct. The differences that matter. We expect these differences will lead to new targets that can be used to develop drugs against these targets. Finally, we are collecting eye tissues from donors with a wide spectrum of MacD including early, intermediate and late stages. The collection of multiple MacD stages should enable us to generate a gradient of changes in MacD that manifests early and progresses through intermediate and advanced stages.

Understanding these changes that underlie this gradient from early to intermediate will lead to new drugs directed at these targets, with the goal of halting the progression from early to intermediate stages. And if we are lucky, this analysis might provide clues of how MacD develops in the setting of a normal high, so we can find a cure to stop it from ever starting.

17:27
And what great news that is for our listeners—people that are suffering from MacD, people whose families have people that are suffering from MacD—to know that your research has the possibility for finding a cure, or, as you said, at least stopping or slowing down the progression of this awful disease.

17:46
That is correct.

17:48
So I hear Dawn Prall—the founder of The SupportSight Foundation—say all the time, research makes medicine. You and I’ve heard her say that many times, it’s simple and profound. When you think about it, just three words, ‘research makes medicine.’ But most of us get up in the morning, we take our medicine out of our little pill box, and we don’t really think about that medicine, like, where did it come from? How did it get designed? How did it get developed? How did it get to be where it is? And so when you’re thinking about this as a researcher and a clinician and a scientist, you’re taking care of patients. But from your point of view, what does it mean when we say ‘research makes medicine’?

18:29
Well, I look at about 10 years of research and clinical trials before a medicine actually gets to the table of the patient, for example. Yeah, at least 10 years. Before a pharmaceutical company can enter a drug into clinical trials, there needs to be some basic research accomplished, which addresses the biological activity of the drug against the targeted disease. Much of this research is performed in academic centers like mine and is usually supplemented by research labs and big pharma. This period of intense basic research can vary from three to six years, or in some cases longer and must be undertaken before a drug can enter a clinical trial. Now, only about five in 5,000 drugs that are tested in the lab ever make it to clinical trials.

19:39
I guess the thing that our listeners would probably be most shocked by is two things. One, that it takes 10 years from inception to actually being, you know, used by a patient. And secondly, this is like, you know, threading the eye of a needle because we’re talking about five in 5,000 drugs that are tested even ever make it to the clinical trials.

20:01
Correct.

20:02
Much less to our hand, so we can take it to cure disease.

20:05
Right, to receive FDA approval.

20:08
That is so rigorous and so difficult.

20:12
Well, yeah, let’s talk about the clinical trials. The clinical trials themselves consists of three phases and are designed to determine the effectiveness of new drugs. Phase One is usually performed in a small number of volunteers, about 20 to 80 subjects and is designed to address the drug’s safety profile. A safety profile includes the drug safe dosage range, its absorption, its distribution in the body and its degradation rate. This phase usually lasts about a year. After phase one, phase two is initiated to identify the minimum and maximum dosages for effectiveness. This phase usually involves between 100 to 300 patients and can take about two years. Phase Three is the final phase and usually involves somewhere between 1000 to 3000 patients. Its purpose is to address the safety and drug effectiveness in a much larger group of patients, and usually takes about three years.

21:28
I guess as a layperson, doctor, it makes me feel really good to know that there’s all these levels of safety and testing before these drugs are released to the public.

21:38
That’s right. And there’s always assurance. There’s also the fact that you need to make applications to the FDA for approval to even begin a clinical trial. And later to bring the drug to market. This adds another two to two-and-a-half years to all this time.

21:58
Wow. Here on MyMacDLife, we hear from people and families who are living with MacD all the time. And along with learning more about how to live with losing their vision, many of them want to learn more about the science. So, you know, if we could kind of go behind the scenes. If we could, we can’t, but we’d like to. And we could go behind the scenes to labs all over the world like yours at Penn that holds promise. What can you tell people listening to this show today? What’s happening right now that would bring them hope? What right now in those labs are kind of the bright light, a possible cure or some new medication in the future that might really benefit those suffering from acting?

22:40
Well, first, let me assure your audience that there is research occurring all over the world to determine how MacD begins, as well as new therapies to slow its progression. In fact, amazing research advances have been made since the first therapy for the wet form of MacD was developed in the 1980s. This initial therapy in the 80s utilized a laser to destroy abnormal MacD blood vessels. Unfortunately, it also destroyed normal blood vessels leading to loss of vision. So around the year 2000, a new type of laser was invented that was directed at a dye while it passed through the abnormal blood vessels of the MacD lesion. The dye was given to the patient by venipuncture. But unfortunately, while the damage to normal blood vessels was limited, compared to the laser of the 1980s, vision was not improved with the laser dye combination. Therefore, the limitations for both laser treatments stimulated the development of a new drug called Anti-VEGF in 2006.

This drug was shown to improve vision and was a major breakthrough. But this drug has limitations that include patient variability with respect to dose, and treatment periods, and the high frequency of atrophy which follows long-term injections. So to decrease the frequency of injections and make the injections more comfortable for the patient, there has been a lot of research in finding new formulations to determine if the number of injections can be reduced on an annual basis. Initial results are promising for reducing the number of injections by almost 75%. There are new injectables that are currently in Phase Two which are highly promising.

There were also a few clinical trials being directed at the complement process. Genes complement is a pathway which consists of over 50 proteins. For two decades now, research has implicated the complement pathway in MacD. One ongoing trial inhibiting complement is with a drug called APL-2. Phase Two trials of APL-2 have shown a reduction in the growth of geographic atrophy. And this drug has now moved into a Phase Three trial with a larger group of individuals.

25:33
So the exciting news, we now have research that indicates we may be able to reduce the number of injections up to 75% perhaps.

25:42
Yes.

25:43
And we have some new complementary pathways proteins that can also have a significant development in a drug called APL-2.

25:49
You said complementary, you meant complement.

25:53
Complement. Yes, complement pathway.

25:55
Yes.

25:26
That’s, well, that’s great news. So there is a lot of hope out there.

26:00
Yes.

26:01
So none of us really know what the future will bring. And you don’t have a crystal ball, that’s for sure. But certainly, you know, before COVID-19, and now and years from now, but the pandemic really is put science and medicine on everybody’s mind, because every day now people are talking about the vaccines and the developments with different pharmaceutical companies. Really like we’ve never thought about before. So people all over the world are putting hope in people like you, Dr. Stambolian, scientists and doctors. So what hope is on the horizon for people who have MacD and what do you find the most promising these days?

26:35
Yes, well, hope springs eternal, I am very optimistic about the future. First, scientists are spending more time focusing their MacD experimental studies on human tissue. models of human eye tissues such as organoids, and cell culture, platforms that contain layers of the human retina are being developed to address the need for human eye models to test new drugs, and study Silva cell interactions. These organoids and other cell culture platforms are built using particular cells from human blood and converting these cells to different kinds of retinal cells. The idea of this technology is to build a human retina in a dish that will allow us to assess biological pathways. And the retina responds to external insults. So let me let me make sure I understand this because I know our listeners would want to understand this. Sure.

27:34
So we’re now not experimenting with an animal. We’re now not experimenting with a human. We’re basically creating in a dish, if you will, for lack of a better word, using organic organoids. Right, using organoids and other cell culture platforms to be able to test the effectiveness of different treatments. Is that it? Did you hear that correctly?

27:54
Yes. Very accurate.

27:56
This is like science fiction. That’s really is I mean, who would have thought 10 years ago? This would even be possible?

28:03
Yes, you’re right. We’ve never had this in our vision 10 years ago. Yeah, well, to proceed as mentioned previously, there are major ongoing efforts to collect human eye tissue to assess the changes occurring in MacD. such efforts utilizing human eye tissue will be the most direct way to identify the cause of MacD and eventually lead to new drugs directed at either preventing MacD or halting progression from the early to late stage and Mac t, where you get irreversible loss of vision.

28:41
That’s so exciting. So, I’m imagining with this pandemic, with the COVID-19—how has the pandemic impacted your research and how has it impacted research in general?

28:53
Yeah, the pandemic has had a major impact on research progress. When the pandemic reached a peak in the spring, the university shut down for about six weeks, allowing only essential personnel to come to work. And since research personnel are not considered essential, research came to a halt. After this period, there was a staging program at the university, which limited the number of research personnel returning to work. This first stage lasted about a month, whereby only 50% of the personnel were permitted in the laboratories at one time. During this period, research personnel were required to work in rotating shifts to limit contact between individuals.

In September, all research personnel were allowed to return to work with restrictions, which included wearing a mask at all times on campus; frequent hand washing maintaining a safe social distance; no in person conferences or lectures; and no eating in groups. Unfortunately, this lack of person-to-person contact limits conversations between individuals, which are very important for discussing new ideas. As a result, research progress has been impeded even more so today with the rise in coronavirus cases.

30:31
It’s very unfortunate. So it’s kind of putting a little behind the eight ball, I guess.

30:35
It has, it has.

30:36
So all of the folks listening to my MacD life know that research takes money and time. So I guess my question is, how can our listeners help advance your work? If each person listening to this podcast could do one thing that would for you move the needle, Dr. Stambolian, what would that be?

30:57
Well, I think the best way for listeners to advance research is to donate money to well-intentioned organizations like SupportSight. SupportSight is at the forefront of funding projects that have high impact. Its leader Dawn Prall spends a lot of efforts screening vision scientists for their ideas and past productivity to determine who would be the best candidate to receive research funding from SupportSight. Her energy is limitless.

And she strives for excellence for herself and those researchers who receive SupportSight funds. One story that I can relate is her devotion to getting things right. No matter the time of day, she and I tried to find a convenient time during the week that included daytime and evenings. But unfortunately, there were no available time slots, and she arranged to talk to me for one-and-a-half hours on an early Saturday afternoon. She’s so devoted to The SupportSight Foundation that there is no such thing as an inconvenient time to discuss new therapies that might stop the progression of MacD.

32:13
Dr. Stambolian, it must be tremendously rewarding to do the kind of work that you do. Tell us about that, that feels rewarding to you and seeing the progress that’s being made.

32:24
Yes, my day is never boring. There are stressful times when I have grants to write and papers to write. I feel so fortunate that my day is always filled with activities and is always challenging to do this kind of work. So yes, it’s very exciting. And I’m never bored.

32:47
Have you ever thought about your legacy? That may be several years down the road when someone is cured of MacD, they’ll go back and say it was your work that led to that.

32:58
No. Well, I would say scientists usually don’t think of things like that. We’re humble individuals. We don’t, you know, think like that. We don’t have a legacy. Our legacy is our publications.

33:12
Gotcha. Well, I will tell you that we really appreciate everything that you’re doing.

33:14
Yeah. Well, thank you.

33:16
So, Dr. Stambolian, thank you for being on the show. I know I’ve learned a lot and I know our listeners have too. The science and the scientists like you who do this research helps us understand more about MacD, about the vision, the eyes, the amazing human body at a cellular level. And, your research is discovery and that’s what creates a pathway for new treatments and a cure. So thank you so much for everything that you do.

33:40
Well, thank you for your time.

33:49
Hey, folks. May 2021 be joyful, healthful, peaceful, hopeful, and kindful. That’s our mantra this year, more than ever. We have to come together. You know, we need to love each other more and hate each other less. So here’s what we’re asking you to do. Pick up your phone, we couldn’t make it easier. Pick up your phone. Record yourself saying, ‘May 2021 be joyful, heathful, peaceful, hopeful and kindful’ at #fullhearts2021. This is your chance to be featured on this show. We’re active on all social media except for Twitter. Thanks for joining in.

43:39
Tips to live more independently with macular degeneration. What you have to do is enhance the contrast between what you want to see and your surroundings. So a lot of you know and you make your own your choices, what works for you—it’s really individualized. But you see better with more contrast. The more contrast the easier.

So here’s a couple of really good examples. One is making sure in the kitchen, for example, that your dishes are solid. There’s no heavy pattern, there’s not a lot going on in the background. Make sure that if you’re eating something that is lighter in color, choose a darker bowl, choose a darker plate. So there’s contrast there, and you can better see the food you’re eating. Also, I can’t tell you how many times I talked to people about this—and they never even thought of it this way—but putting liquid into a glass or a mug or a cup is hard to do. Right? You all know it, it’s hard to see, it’s hard to line it up. So if you’re drinking water, have a dark glass, use a dark mug. If you’re drinking soda that’s dark, use a clear glass. Okay, use a lighter glass. Again, the contrast is what’s key here. And it does make it significantly easier to pour out of a pitcher to drink, to pour out of a bottle and to find your food. I hope that’ll help. Simple today, we want to make your life easier. And we’ll have more after this. Thank you.

45:48
This next segment is brought to you by our feature sponsor, Vispero, the world’s leading Assistive Technology provider for the visually impaired. Visit our great friends at Vispero at www,vispero.com. They’re the home of Freedom Scientific, Optelec and Enhanced Vision brands.

So, Dawn, I understand on today’s Assistive Technology, we’re going to be talking about something called Topaz. So what’s Topaz? It sounds fascinating.

46:20
Shawn, today we’re going to be talking about the Topaz. It falls into the category of desktop magnifier. And it’s almost like a PC only really sits in your office or wherever you study—your den, on a desk or on a table. And it’s like a workhorse. It comes in all different sizes, and it’s really easy to use. And you know, it’s really a popular device among seniors because the functionality is perfect for them to read their newspaper or their Bible or whatever they want to read, whatever is important to them. So I’m really kind of excited about this week’s because it’s just a stalwart that everybody needs to know about.

47:27
I can’t wait to hear more about it.

47:27
All right, well, good afternoon. My name is Bill Kilroy. I’m Vispero’s 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.

48:16
Again, I want to thank The SupportSight Foundation and the MyMacDLife podcast folks for allowing Vispero, myself, Bill Kilroy, the Northeast Sales Director and Mike Wood, our Strategic Sales Manager for Education, to share some information on our on our products. And today, I—unfortunately, Mike can’t join us in this session—will be sharing some information on our Freedom Scientific Topaz line of desktop video magnifiers.

So I’m a little bit excited about this, because it’s sort of a back to-the-basics type of device for many users. And cannot only be used by obviously users in their home and users in schools and things of that nature, but it’s a great device to be able to have out there in the community. Whether it’s at a town hall, a library, or some other place of public accommodation. What is it? A desktop video magnifier is a—think of it as a larger device that is stationary and sits on your, on a desk primarily. And it is a video magnification system that includes a camera monitor and what we call an XY table so that somebody could put down a piece of print material, a newspaper or a book, a document or form that they need to sign. And they can look at that in front of them and move that information around the table and magnify it anywhere from just under 2x magnification to—many of the models go over 60+ in magnification level.

And the Topaz is a great device. It’s unique in a way because of the way in which we have our control panel laid out. So the control panel on the Topaz sits at the very base of the monitor and think of the monitor as something that’s floating on an arm on this unit you can raise or lower depending upon your height. You could actually stand at this unit if you wanted to. And it can swing left or right. So we’ve seen people that have done presentations, where there have their notes on the XY table, the image of those notes is magnified yet they’re standing left-to-right of the monitor just looking at the monitor and will glance over occasionally, as they’re addressing their audience and doing the presentation to their magnified set of notes.

So it’s a great device for what I call long-term reading. Because these devices have a bigger field, i.e. bigger monitor. They can magnify, obviously more information on a page at a time so that there’s less mental processing to put the characters into words, the words into sentences, the sentences into paragraphs. And you can, you know, go on these devices for longer periods of time than, let’s say, a handheld magnifier, where the field might be 5 inches. So the Topaz comes in, the monitor sizes come in anywhere from 22 or 24 inches.

51:34
And these are HD cameras, high-definition cameras, so you get a nice clear, sharp image. I sort of moved on from the from the control panel a little bit, it’s a color coded control panel. And so you have separate colors for each control magnification, video enhancement mode for changing the contrast. So you can look at this in color. But I can look at as high contrast white-and-black, black-and-white, there’s 30+ magnify color combinations that you can utilize and brightness control.

So very easy to use, very useful in the sense that you can do so many different things on it. I think Mike mentioned earlier with some of our handheld devices, you know, reading a recipe, looking at your bills, writing at this device, fill out a form, write a check, you know, make notes, etc. If you’re a student in class, it’s a great universal device for that type of app for those types of activities. So whether it’s at home, on the job, or in school, we see these types of devices everywhere. And you know, whether it’s a Topaz, you know, magnification only in 20-22 or 24-inch or our Topaz OCR, which in addition to giving you a live camera view can also scan and read the document that you’re looking at.

So it’s a great device for you know, dual modality and extends your usage of that device. You can literally be reading a document—I’m reading a chapter in a book and I get to page 25. And I’m you know, I’m burnt out. So what do I want to do? Well, I want to keep being productive. So what I’m going to do is I’m going to start scanning pages and I’m going to sit back and listen to what’s being read in this chapter and absorb it that way.

So, the Topaz OCR is a great choice to have and goes above and beyond with the OCR capability in addition to magnification. So that is sort of a brief summary of the Topaz desktop video magnifier from Freedom Scientific. Again, we are a company that has multiple brands. So our other two low-vision organizations Enhanced Vision has the Merlin line of desktop video magnifiers, and Optelec division has the ClearView line of desktop video magnifications.

So whether you want to learn about the more about the Topaz, or the Merlin or the Optelec, there’s two ways to really get in touch with us. Go online and you will type in www.Vispero.com. Or call our toll free number at 1-800-444-4443 and speak to one of our customer service representatives. As Mike and I have alluded to, you can tell them what you’re interested in, they can guide you through some of the products. And they can connect you with a local resource that can help you in your in your home. Or schedule an appointment to potentially come into their showroom and learn more about these products and test them, test drive one for you, yourself. So thank you very much. Again I want to say thank you to The SupportSight Foundation and the MyMacDLife podcast for having Mike and I on and have yourself a great day.

55:18
Hey, everyone, thank you so much for spending time with us today. We’re really glad you’re here. Please come back. May 2021 be joyful, healthful, peaceful, hopeful and kindful.

55:32
Yes, it’s definitely a privilege and a pleasure. And 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.

55:51
This program is empowered by The SupportSight Foundation. The SupportSight Foundation’s mission is to save sight for millions of people who suffer from age-related macular degeneration, AMD and lose their precious vision, as a 501(c )(3) 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’ve placed a high priority on connecting with people, their families and loved ones who live with a 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, supportsight.org. Or call us at 888-681-8773 and connect with us on social media. Thank you.

57:08
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 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.

Leave A Comment

Rate this post!