Interview: BrightFocus Chats on Macular Degeneration
Dr. Guy Eakin
The Talking Information Center interviews Dr. Guy Eakin, Vice President of Scientific Affairs at BrightFocus Foundation, about the mission of the organization and the new BrightFocus Chats telephone discussions on macular degeneration.
Narrator: Dr. Eakin, thanks so much for joining us today.
Dr. Guy Eakin: Oh, it's absolutely my pleasure. Thanks for having me.
Narrator: And before we discuss these new chats being offered by the bright focus foundation on macular degeneration was wondering if you could just give us a brief overview of this organization and its mission.
Dr. Eakin: Brightfocus is our foundation, it's at the forefront of brain and eye health. So my area of the organization is really the research side where we're dancing early stage investigator initiated research around the world. So as of next week, I guess it is I'm delighted to say well have awarded just shy of our $40 million and vision research, and that's in addition to about $80 million that we've offered in one of our other programs, which is an Alzheimer's program. That's the research side. But no less important is our educational side, which offers resources to people affected by or interested in macular degeneration and Glaucoma, and our mission beyond research is simply to empower patients to better understand their bodies and to take action for themselves and others.
Narrator: And looking at your involvement with the organization. How did you first become involved with bright focus? And what is your affiliation to the foundation?
Dr. Eakin: Sure. I’m the Vice President of scientific affairs, so I'm employed by the foundations since guess it was November six 2006 is when I started, the majority of my duties are on the research side. So what we do is we look for good ideas that are happening in academic research and in pharmaceutical companies around the world. And we asked the question of whether or not we can support those in a way that would move the needle on research. And these diseases we receive proposals every year for researchers around the world. And the way we look for what is good research is we convene an advisory body is suppose I'm really the most respected researchers in each of these disease field and we bring them together to really pick apart every single proposal we receive and look for ideas that really just need a little shop and need a little boost to make them ready for prime time. I'm really proud to say that at this moment in time, you know, just looking at today as a snapshot, we have about four different technologies that are going into clinical trials or already in clinical trials, and hopefully in the next few years, be in clinics and being out there helping save people’s sight.
Narrator: Dr. Eakin, could you please tell us about your specific area of interest?
Dr. Eakin: These diseases, these vision diseases that the Brightfocus foundation supports, are glaucoma and the age related macular degeneration. It's a both of those are primarily diseases that affect elderly people. But my training was actually at the other end of the aging spectrum. It was in embryology and development. And what's kind of interesting is that during development, it's really a study of when genes turn on, and when they turn off, and then these diseases even in aging, and it's not just limited to glaucoma, or macular degeneration. But many of the diseases that we're faced with, as we age our problems with the control of the genes that our body and so we can look back to development to get some clues about how the rein those genes expression and restore that control that we've lost.
Narrator: And those conditions in terms of visual conditions are things that affect so many people, especially the macular degeneration side of things. As you know, as we know, the baby boomers are now getting to that age where a lot of these age related diseases are starting to become a major player.
Dr. Eakin: Oh, the numbers are absolutely staggering. There's the, you know, the stats that we use, maybe about 11 million people with macular degeneration, maybe about 4 million people with glaucoma. And in the US, there's only about 330 million people, you know, in the US. So this is really enormous problems for her. And for her nation. And for the world at large. I mean, we don't need to be US centric. And when we look at the world at large, these diseases are the number one cause of irreversible vision loss. And so it's it really is going to require a world effort in a world focus to cure these diseases.
Narrator: And with that in mind, looking forward to this new Brightfocus chat series that the foundation has developed, as I understand it, this is specifically with regard to the macular degeneration side of things. For our listeners who are unfamiliar with this disease. Could you please explain a brief overview of what this condition is and how it affects a person's day to day life?
Dr. Eakin: We're giving it a shorthand of macular degeneration. But we're really we're focusing on one macular degeneration, which is the age related macular degeneration. It's a horrible disease. As I said, it's the leading cause of irreversible vision loss in adults 60 years or older. And what's amazing to me is, you know, we, we all know about cancer, you know, cancer is a word that's on the tip of everyone's tongue. And if you take data from the National Cancer Institute database and if you ask it, you know, I didn't have time in the last 20 years how many people had a cancer malignancy, you know, that number is about 11 million people, which, as I said earlier, that's about the same number of people is have AMD so what's amazing to me is that, you know, we, as a society really don't know about this disease, AMD comes in two sort of broad categories. And both categories affect the central area of your vision, especially that sharp detail and color components. So about 90% of people are going to have the, what's called the dry form at the disease. So dry macular degeneration and it began very subtly, you know, people need may need more light for reading. As it progresses, there's more prominent loss of vision, maybe the development of some blind spots right there in that center of your vision. And that, of course, makes many activities much more difficult by recognizing people's faces, or certainly reading. Not everyone is going to progress to the other type of the disease, about 10% of people are going to progress to what's called the wet form. So I mentioned the dry form, we have a wet form at the disease to and it's a more severe form. And it's called the wet form because new blood vessels are going to grow in the back of the eye and the little tissue called the macula and they're going to burst and leak blood into the surrounding tissue. That's why it's referred to as wet it's much more severe condition and the results in prominent distortion, you know, straight lines that a person sees are going to appear wavy the floor or tile patterns in the bathroom might appear to move for shift without, without a person moving their head or blocking it. These are both severe conditions and they should be handled by professional eye care providers though there are some treatments under development for the dry form of AMD, those are still down the road where we're at Brightfocus foundation for supporting some of those. And we hope to be able to help educate people about those as they come.
Narrator: Now, how did the idea for the Brightfocus chats, first develop, and what was the process like to develop a plan for a monthly call series?
Dr. Eakin: There's a tremendous amount of information out there about these diseases. But there's a lot of misinformation too. And the other part of the problem is we heard too many stories of people, you know, they get their 10 minutes in an eye care providers office and they walk out with a very scary diagnosis of AMD. That's inappropriate of what we wanted to do was create a community where people in a very empowering and positive way could learn about macular degeneration. They get here for well respected clinicians that don't have a conflict of interest in the area. We wanted them to hear it from each other. We wanted to hear about the disease from people who are living with the disease. Like patient advocates, we had a really positive launch just last month and will be running our second installment this Wednesday. But there's no slides, there's no computer screens, there's no reading required. You just sit back and listen in on a phone call. And you can take notes if you want. But if you miss something you can call our foundation we record everything we provide transcripts so our listeners or the people who helped them can get the information they need. A that even after the talk includes we have patients on the line you know who are giving their stories who really have done it and they're showing that you know that this can be done these are diseases that can be lived with the people can have very fulfilling lives. Even with compromised vision. The chats are going to be hosted it's the last Wednesday of every month and that'll be 1pm Eastern Time 10am pacific time. And so what we suggest is that people call into us to register and the reason that is that we use are really neat system so if you're registered will call you at the appropriate time and that means you don't have to remember when to call in you don't have to you know you can go about your day and the phone rings and you pick up the phone all you all you have to do is pick up that phone and then and then you're listening to the conference call it will have future topics on a on a monthly basis that will include macular degeneration treatments, living a quality life with low vision making healthy lifestyle choices and how to take advantage of participating in clinical trials. I should say while we're on the line if you want to register the telephone number is 1-800-437-2423
Narrator: Now, tell us about the inaugural Brightfocus chat that took place in February, what information was shared during that call and what was the response like?
Dr. Eakin: We had a clinician scientist from the University of California Los Angeles. His name's Dr. Michael Goran, and he's really one of the leading researchers on the genetics of macular degeneration but he also sees patients itself in clinical practice and then we had a patient advocate who's a really brilliant poet and artist, Her name's Mary Ann Ranker-Fine and she's been living with macular degeneration for a couple decades now. And as an artist has learned to accommodate the macular degeneration and continue to be productive as a visual and a written word artists. We received about 60 questions that that fed into our question and answer session with our guests. We had, you know, probably 130 or so people who were who were on the call at any point in time. And we're in the process right now of publishing a question and the answer document. As I said earlier, we provide transcripts and we're going to provide the question answer document to go back and actually take some of the questions that were submitted to us. But we didn't get around to asking, or we're going back in and addressing those questions and getting them back out to the people who registered for the call. All that is required to participate in our chat series is the telephone and a pair of ears.
Narrator: And if our listeners want to learn more about the work that bright focus foundation is doing, or maybe to participate in these Brightfocus chat, how may they do so?
Dr. Eakin: You're welcome to call our 800 number that's 1-800-437-2423. If you use the internet or have someone to help you with the internet. The website is www.brightfocus.org. So if you want to call directly in to the Brightfocus that we're going to have this Wednesday. So they'll be March 26 mentioned at 1pm Eastern, that number is going to be 1-877-229-843. That number again, is 1-877-229-8493. And you're going to have to put in a quick code after you after you dial that number, that number that code number is going to be 112435 to the code number is 112435.
Narrator: I certainly hope that some of our listeners will have a chance to tune into the Brightfocus chat.
Dr. Eakin: Thank you so much for conducting the interview. Thank you for the interest and Brightfocus foundation. We're just really excited to spread the word about this disease and helping to support on the research side, helping to support what we believe will be tomorrow's therapies for this disease. So we really appreciate everything you all are doing to help raise that awareness.