On 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)

Quotables

“You are or you aren't what you think about all the time.” – Dawn Prall

“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.” – Shawn Doyle

“I've always said that in order to be motivated and positive, you have to change the language. So my suggestion… is instead of using the word ‘disabled,’ say ‘I just have a condition, not a disability.’ So that's a mindset change.” – Shawn Doyle

“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.’” – Shawn Doyle

“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.” – Dr. Dwight Stambolian

“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.” – Dr. Dwight Stambolian

“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.” – Shawn Doyle

“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.” – Dr. Dwight Stambolian

“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 of MacD, where you get irreversible loss of vision.” – Dr. Dwight Stambolian

“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.” – Dr. Dwight Stambolian

Recommended Resources

- https://www.med.upenn.edu/apps/faculty/index.php/p5715 

- https://www.pennmedicine.org/departments-and-centers/ophthalmology

- https://www.enhancedvision.com/low-vision-products/merlin-family-of-products.html

- http://www.supportsight.org/research/

- http://www.mymacdlife.org/

- http://www.supportsight.org/

- https://vispero.com/

- https://www.freedomscientific.com/

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

- https://www.enhancedvision.com/

- https://www.enhancedvision.com/low-vision-products/merlin-family-of-products.html

- https://us.optelec.com/