B (3:44)

Yeah, Ricky, you're touching on something that is very challenging for patients and families, not only because the diagnosis is overwhelming. A lot of eye doctors don't really understand, especially the rare diseases, because they just don't see them that much. And that's where we and some of the clinical researchers we fund can help. And our website and our team, we understand the conditions, we can help people understand what's going on. We provide no cost genetic testing because most of these conditions are caused by mutations in a single gene. And if you can identify that mutated gene, it really helps people understand the diagnosis, clarify the diagnosis. It helps them understand who else in their family might be affected or at risk. Maybe most excitingly for the patients and families is it helps them understand what research might be relevant for them. Depending on where somebody lives and which doctor made the diagnosis, we could refer them on to a doctor, let's say a clinical research center, that has more knowledge about these inherited retinal diseases. That could really be helpful. They can get a more thorough, comprehensive exam. And going back to genetic testing again, we have a no cost program that people can sign up for. As part of that, patients are also put into a registry, my retina Tracker registry, which helps get them on the radar screen of researchers and companies that are conducting clinical trials. And being in a registry is very valuable for the patient and the researchers. I want people to understand we never give away personal information. If a researcher or a company is interested in, in patients for trials, we actually run the query. We actually contact the patients and families and let them know. Retina Therapy company of, you know, Nebraska, whatever, I'm making up a fictitious name. They're interested in you for a clinical trial and we give you the contact information. So we protect people's privacy and identity.

A (6:24)

Right.

B (6:25)

So the registry, the no cost genetic testing, and then finally we have chapters throughout the country, more than 45 right now, where people can find community and learn about local resources and just meet other people who are on the same or similar journeys. And that can be very powerful.

A (6:47)

Oh, definitely, that's something that you don't have to tell us twice. Here at Hadley, we really do believe in that power of community for finding someone, whether you are the person who is diagnosed or maybe your spouse is looking to connect with others who are a spouse of someone with vision loss and just finding those people who are on similar journeys. You can share that info between each other and one person has the answer to a question you've been asking and vice versa. So it is so, so powerful. I want to rewind a little bit and talk just a little bit about the genetic testing again. So one of the reasons obviously that you might encourage someone to do this is to figure out exactly what that diagnosis is, who might be affected in your family, and then get you into that registry. Let's say that you are, are not of the age where you're thinking about having kids anymore. And you happen to know, hey, my diagnosis is age related. Is there still a reason to do that genetic testing?

B (8:07)

You know, that's a great question. And for many years up until fairly recently, the answer I would say is no. And the disease I think of related to your question is age related. Macular degeneration and AMD is sort of a complex condition or it's complex and there are many risk factors aging your lifestyle if you smoked or you don't eat a healthy diet. But there are genetic risk factors. But today, one reason you might think about genetic testing is that some therapies are actually targeting certain high risk genes. And so if you know you have high risk genes, there are certain gene therapies, for example, that would be appropriate. So there may be in some cases reason to get genetically tested if you're interested in, say, a trial for a gene therapy.

A (9:16)

I know that a lot of what you do is research, whether it is your funding research or you're kind of collating this research that has been done and sharing news about treatments or potential advancements that are happening. And for people who want to know more about that, how can they do that? Through foundation fighting plainness?

B (9:44)

Sure. And that's what's so fun for me is communicating the research and working with the foundation team to talk about the research because there's so much great science underway. But to answer your question, our website is chock full of great information on emerging therapies, related research, as well as the inherited retinal diseases and AMD. And our website is fighting blindness.org with that said, we have local meetings and events throughout the country that are educational, we have webinars that are international that are open to just about anyone. In fact, we have a webinar on age related macular degeneration. So that will be a webinar on, you know, what age related macular degeneration is, some of the risk factors, and then of course, some of the emerging therapies. And I think we might also have some discussion of low vision resources for people with age related macular degeneration. So there are many different ways that people can get engaged. And one thing that I try to do, and I know my colleagues try to do, is engage with people at the level they're at. Because some people want pretty simple science and the broad overview, just the basics. There are other people that really dig deeply into the science and want to know the details. So we try to accommodate everybody. The science can get pretty complicated, but we do try to keep it simple for a general audience in many cases.

A (11:47)

Yeah, I know on the website there are a number of educational videos that are exactly that. It's that place to get you started. You get that overview and then you can decide, you know, I would like to really dig down and get into the nitty gritty of this. And it's great that you're providing info for both those types of people because you may start out one way and just, you know, I want to know the basics, what can I expect? And suddenly it becomes a thing that you really want to learn more about. So we've gone through a lot. We've got those educational videos you do webinars. We'll have a link to that in the show notes, the one about macular degeneration, as well as where you can find those additional presentations and webinars. The Retina Tracker, I believe that's called. How can people get involved with that? So let's say someone is saying, you know, if there are clinical trials, if there are treatments, I want to be called if I'm eligible. What's the process to kind of get that interest documented?

B (12:57)

Sure, great question. And I'd say there are really three things that people should do if they're interested in clinical research. Being in the my Retina Tracker registry is definitely a great way to do that. And you can go to my retina tracker.com org and that's where you register whether if you get a genetic test through us, you will automatically be registered. But we want you to come back in and complete additional surveys. If you didn't get genetically tested through us or you'd. You've never even been genetically tested. If you have an inherited retinal disease, you can go in and, and just set up your own record. You don't need a genetic diagnosis to be in the registry. So easy to do that yourself. Just for the record, right now we're not really accommodating people with age related macular degeneration. In my retina tracker, it's something we're thinking about. We're more focused on the rare inherited retinal diseases. But in addition to my retina tracker, I strongly encourage people to visit our website. At the top of the website there's a way to register for news alerts. So you're getting updates on emerging therapies and research. Because through my retina tracker, you're not going to get notified about every trial. In addition to that, we, and it's actually something I maintain on our website, we have a clinical trials pipeline chart that lists virtually all of the current clinical trials that are underway. And that's on the research tab on our website. So those are the different ways to stay up to date on what's going on on the clinical trial front.

A (15:01)

Excellent. Now for someone who is looking for local support, I know there is a special spot on the website where there are local chapters and I think each chapter probably does its own fundraising and things like that. Do you have thoughts or can you give just a brief overview of what might people find if they join one of these local chapters? Are there things that are common among all of them or is it really. That is something that's handled locally and each one sort of has its own flavor and things that it does.

B (15:36)

Yeah, you know, that's a great question. I'd say a little of both. One thing that we try to do at the local chapter level is provide a sense of community. So we try to bring people together. There is an educational aspect to the chapters and it's not just about research. Often we feature low vision speakers, people who know about resources and accommodations, much like yourself. And being connected to the community is just a great way to learn about doctors in the community and the different resources. But like a lot of groups, each group has its own kind of personality and focus. We have volunteer leaders, a president and some resource chairs and things like that. And then we do have our community managers, meaning staff who help organize and manage the chapters. And make no mistake, we fundraise. That's an important part of our mission. Yeah, so the chapter is where you can get involved in a walk or maybe a golf tournament or a dinner or people organize all kinds of creative, do it yourself kinds of events for fundraising. So there's definitely that element as well.

A (17:05)

Wow. I feel like we've covered quite a bit and just this one website has so much information. I was looking through it just in preparation for this and I found it fascinating myself, just kind of going down a rabbit hole or two finding out some information. So I think that our listeners can spend a great deal of time there learning more about what you do and how it might benefit them. So is there anything else as we kind of bring this to a close? We've covered a lot, but is there something that you hope people will definitely take away from this or something that we didn't cover that we should have?

B (17:45)

I guess just the other thing I'll say is, you know, we're all about community, we're all about putting information out there. But for me personally, I think helping people on an individual basis on their individual journey or their family journey is really important. Vision loss between people can vary a lot. The emotional aspect of their vision loss is personal, it can vary. And they're interested in participating in research or trials can vary. So we try to meet people where they're at in their journey. That's really important to me. So, yes, we want you to be a part of the community. We want you to see all the great stuff that is in our website, but hopefully we can connect with people on a one to one basis and help them where they're at. And you can go to our website and go down the rabbit holes, you can learn about the chapters. But if you'd rather just send kind of a a single email, you can do that to info@fightingblindness.org and just ask your question, whether it's about research or what chapter would be right for you or whatever question you might have. And we also have a live attended phone service, 1-800-683-5555. So if you want to call up and talk to a living, breathing staff member of the foundation Fighting Blindness, that person will be happy to help you.

A (19:34)

Awesome. And we'll have all of that info in our show notes along with a link to the Eye on the Cure podcast where which Ben hosts. And Ben, I just want to thank you so much for dropping by, talking about what it is that you do and what the organization does. It's clear by listening to you, you started out maybe not knowing much about the retina or biology or any of that. But as you learned, you developed that passion for helping other people to learn about this as well. Thank you again. We really appreciate it. And it's been great having you.

B (20:13)

Well, thank you, Ricky. It's a pleasure and a privilege to be on the podcast and have this opportunity to communicate all about the foundation. And I just want to say we're grateful to Hadley and other organizations that are providing resources to help people on their journey because, yeah, we're all about the research and that's really important to a lot of people. The research takes a little time. It's challenging. There's a lot people want to do today to maximize their productivity, enjoyment, quality of life. And we really appreciate what Hadley does to help people. So thank you and Hadley for all you do.

A (21:02)

Absolutely. Thanks so much. Got something to say? Share your thoughts about this episode of Hadley Presents or make suggestions for future episodes. We'd love to hear from you. Send us an email@podcastadleyhelps.org that's P O D C A S tadleyhelps.org or leave us a message at 847-784-2870. Thanks for listening.