The episode begins as Dawn Prall interviews Ilana Yellen from Evoke KYNE about their recent work on AMD Central. AMD Central is a brand-new resource website created to provide verified, trusted, educational information to those effected by MacD. AMD Central was created by the leading organizations in the macular degeneration field: The SupportSight Foundation, BrightFocus Foundation, MD Support, Prevent Blindness, and the American Macular Degeneration Foundation. With the primary goal of user ease and accessibility in mind, the site itself is designed to be functional; colors and font sizes can be tailored to those who have vision loss. Ilana then goes on to speak about her growing awareness of the AMD community through this collaboration and explains new projects at Evoke KYNE.

Co-hosts Dawn Prall and Shawn Doyle then share a quick tip for those with MacD. They suggest practicing using peripheral vision and ‘ears to eyes’ strategies, which can be useful for any stage of central vision loss.

The show continues as Dawn interviews fellow AMD Central founders, Matt Levine from the American Macular Degeneration Foundation, and Dan Roberts with MD Support. They highlight key features of the site, such as the Starter Packs to guide those new to the MacD community through basic information. They then share their experiences of coming together to form AMD Central and further converse about this exciting and revolutionary collaboration.

Next, Dawn Prall interviews The SupportSight Foundation board member, Dr. Robin Smart. Dr. Smart tells a personal story of the lasting influence of her grandfather and how MacD has affected her family through generations. As an advocate for education, Dr. Smart relates the importance of information sharing tools, such as The SupportSight Foundation and explains her commitment to the organization.

Finally, the episode concludes with Vispero’s Bill Killroy, Senior Sales Director for the Northeast, and Mike Woods, Strategic Accounts Manager for Education, discussing the benefits of the Compact 6 portable video magnifier. This durable, intuitive, high-tech device has OCR, and Bluetooth capability, meaning it can read text aloud or can mirror cast text to an even larger device, such as a TV. You can even customize the contrast colors via the easy-to-use touch screen for your personal needs.

What We Discuss in this Episode

This ninth episode covers the following featured topics:

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. (6:17)

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. (9:02)

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. (11:41)

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. (17:51)

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. (31:03)

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. (43:56)

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. (45:44)

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. (56:20)

Quotables

“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.” – Dawn Prall

“I think that's the thing that I really want people to understand is that we're empowering people with accurate information.” – Dawn Prall

“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.” – Matt Levine

“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?” – Dawn Prall

“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.” – Matt Levine

“He didn't just lose his vision. We all lost something, you know, we all were affected by the impact of the disease.” – Dr. Robin Smart

“… 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.” – Dawn Prall

“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.” – Dr. Robin Smart

Recommended Resources

- https://amdcentral.org/

- https://www.evokekyne.com/

- https://www.brightfocus.org/

- http://www.mdsupport.org/

- https://preventblindness.org/

- https://www.macular.org/

- http://www.supportsight.org/

- http://www.mymacdlife.org/

- https://vispero.com/md s

- https://www.freedomscientific.com/

- https://www.enhancedvision.com/

- https://us.optelec.com/

- https://us.optelec.com/products/compact-6-hd-speech.html

- https://www.healthyvisionassociation.com/

- https://www.novartis.com/

- https://www.centricbank.com/

- https://hinklestein.com/

- https://maculardegeneration.net/

- https://mymacularjournal.com/