WEBVTT

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Having access to the latest info

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and research on your eye condition

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in a way that's approachable

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and easy to understand can make all the difference.

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In this episode, we learn about the BrightFocus Foundation

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(light music)

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from its Vice President

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of Scientific Affairs, Diane Bovenkamp,

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and Hadley's Chief Program Officer, Ed Haines.

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I'm Ricky Enger, and this is "Hadley Presents."

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Welcome to the show, Ed and Diane.

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It's really good to have you both.

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Thanks, Ricky, really appreciate it.

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This is gonna be a lot of fun.

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Glad to be here.

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Ed, I know you're pretty familiar with BrightFocus

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and in fact you've had a chance

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to do a presentation for them.

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So I imagine that you have

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some really good questions for Diane today,

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so yeah, let's jump right in.

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Thanks very much, well, Diane, first of all,

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let me just thank you for being with us today.

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We're really excited to talk about BrightFocus

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and I think it's a wonderful organization.

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So if you don't mind,

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I'll dive right in with my first question.

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If you could just tell us a little bit about BrightFocus,

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your history and the mission of your organization.

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Thank you so much.

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This is so exciting to be here with your organization

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that's been around for 100 years

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that's doing good in the community, I'm so excited.

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Yeah, so BrightFocus Foundation

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has been around 51 years now

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and our primary focus is to fund research around the world

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to find cures for macular degeneration, glaucoma,

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and Alzheimer's and related dementia.

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So we funded $300 million for the past 50 years.

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Wow.

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Yeah, in 25 countries with more than 1,900 grants

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to more than 6,300 scientists.

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And yeah, and so we basically believe

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that there's no geopolitical border that we can't go

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and hunt down the next innovative idea to maybe,

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maybe that next idea could find the cure.

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And the second thing that we also do

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is we translate all of the research that we fund,

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and actually that's around in the world,

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into lay language for affected families

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so that you can understand

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and learn ways that you can become empowered

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to address and keep healthy.

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Boy, Diane, that's so important.

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I've worked with so many people

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that really don't understand their diagnosis

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and don't understand the implications,

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and I think I read a statistic once that says

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about 25% of people with macular degeneration

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don't even really know the name

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of the condition that they have.

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Wow.

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So that's just fantastic that you're

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not only working with the medical community and researchers,

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but then translating the results

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of all of that research into language

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and information that people

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with a diagnosis can understand, that's just wonderful.

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So sounds like you're serving almost two audiences.

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You're serving the medical community

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who's doing the research

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and then it looks like you're also really trying to focus

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on the folks who have the diagnosis as well.

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So to that end,

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you have these great chats

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and I think you have chats

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related to macular degeneration and glaucoma,

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and it was a lot of fun to be on one of your chats

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just a little while ago.

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So I wonder if you could talk about these.

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Why did you start them

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and what was your goal?

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Yeah, we started, believe it or not,

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10 years ago, these chats,

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and they're really cool

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because just like this interview,

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they're audio-only, they're friendly for people

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who are visually impaired,

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and people can sign up

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and it's set up so that on the day of the chat,

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a telephone will call you.

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You just have to pick it up

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and listen to it.

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It's really kind of very convenient

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and it happens every month,

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and the reason why we did it was exactly like what you said,

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so that people can know more about their condition

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and to learn about ways to become empowered.

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I just recently had last week a chat

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that I did with Dr. Sheldon Rowan

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from Tufts University in Boston

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and we talked all about lifestyle modifications

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and the microbiome, the bacteria in your gut

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can actually affect your eye disease, if that makes sense.

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And so yeah, so there's all these things

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that you can do to become empowered

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and maybe take all these questions,

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and there's a transcript every week

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and we push it out on many different medium

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that you could actually print this out

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and bring it to your doctor

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and ask them about it.

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So yeah, it's all about trying

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to spread the information and become empowered.

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Well, that's fantastic, so people sign up.

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They get a phone call so there's no barrier there.

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They don't have to learn how to use their phone

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if using the phone is difficult for whatever reason,

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for vision-related reasons.

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Is there any opportunity for interaction?

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So can people ask questions of the speakers

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who are featured in your chat?

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Or how can they provide feedback?

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Absolutely, there's many different ways

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for feedback 'cause that's what we want.

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It's kind of like Stephen Covey sharpening the saw.

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We always want to try and improve.

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And so not only can people ask questions before the talk,

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and actually I encourage people to do that

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if you do go and sign up

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because then I put that on my list if I'm the moderator

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of questions that I can maybe ask the speaker.

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But then also if you think of something

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in the middle of the chat,

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they can press a button,

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you can go and talk to a live person,

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tell them your question,

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and then get back onto the call.

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And then also at the end of the talk,

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we always ask people with a simple press one, two, or three,

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press a number, did you like this chat?

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Was it helpful or was it not helpful?

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So I think that it's very important.

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We don't wanna do podcasts

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or chats just for the sake of having chat.

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It has to be serving the community.

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No, I totally agree.

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Now how often do these chats happen?

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Is it once a month, a bi-monthly?

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And how do you keep current

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and interesting with regard to your subject matter?

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It sounds like you have a lot of researchers to draw on.

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Are those primarily the presenters?

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<v ->Yes, so we've done,

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in the 10 years, we've done 115 episodes to date so far

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and you can access all of these on our website,

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but it's monthly, it's the last Wednesday of every month

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just so that it's very easy for people to remember

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and then for the inspiration,

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yeah, so it comes from many places.

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So I'm the chief of the Scientific Affairs Team,

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so we go around the world

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or virtual to different scientific conferences

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so we know that there's hot topics.

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We know thousands of researchers around the world,

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as well as clinicians

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because we fund research

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that goes basic, translational, and clinical.

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And we also do have our Scientific Review Committee,

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our advisors, that they can give us advice

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on what's the hottest topic.

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And we do, when we'd go to say ARVO or ICER

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which are two major vision conferences,

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just the topics there

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and we see what are all of the pharma companies

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and biotech companies that are in the exhibit hall

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so we can keep track

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of what are the clinical trials going on

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'cause I mean, that's another topic

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to try and keep people abreast of what new treatments

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might be on the horizon.

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So yeah, I don't think

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we'll ever run out of things to talk about

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because I find that,

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yeah, you probably find this too,

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that people's curiosity is unquenchable.

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Yep, absolutely, I'm curious now myself.

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If you had to name five episodes

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that received the most interest from your audience,

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what would be a few of those?

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Yeah, so I think that we do tend to repeat

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some of those topics with updates every few years,

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but I think the number one is when we bring on a clinician,

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scientists that tells you what's the latest in clinically

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and medically dealing with my disease.

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I mean, I think that's number one.

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The one that we just had right now,

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we had 450 live listeners

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and it'll be interesting to see,

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but normally the ones on lifestyle, right?

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The food, nutrition, it's only been proven,

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there've been enough scientific proof

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in the last five or so years

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for people to say, ah, you know what?

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Exercise is good for trying to either prevent

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the onset of the disease.

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Exercise and nutrition is great for either preventing

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the onset of the disease or maybe progression.

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And also with macular degeneration,

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you know all about

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the AREDS clinical trial and the Nutrition.

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That one I guess is a third type of trial

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people want to keep on top of that

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and just as a summary,

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it's a clinical trial that was led

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by the National Eye Institute,

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Dr. Emily Chu and others,

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that shows that a specific combination of vitamins

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and antioxidants can help if you have intermediate dry AMD,

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that it might prevent the progression to wet AMD, and yeah.

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I see, that's exciting.

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Yeah, yeah, yeah, so that's the third

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and I think that the fourth and fifth type,

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I did one chat in glaucoma

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and one chat in macular degeneration on stem cells,

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what's the latest in treatment within the last year.

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How to regenerate the eye

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even if you fully lost your vision,

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there are clinical trials

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and research on the horizon that maybe you could try

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and get your vision back.

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So those were really exciting so you could look that up.

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I can imagine.

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Yeah, and then I think just the fifth one

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is what's going on with clinical trials,

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upcoming clinical trials?

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I think those five,

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and you can go in and find them.

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But what I understand is on average

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we have 600 live listeners every month

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for the macular chats

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and then nearly 10,000 recorded listens

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on average per month.

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Wow, wow.

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Yeah, yeah, I'm amazed.

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I mean, we started out 10 years ago

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with 100 people live,

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so all of our vision chats are available to listen

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as podcasts on the go,

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on YouTube, Spotify, iHeartRadio,

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Amazon Music, Apple Podcasts, and Pandora.

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Fantastic, I was just gonna ask

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how you access those recordings, so that's wonderful.

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That's a big audience.

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Yeah, yeah, and just it gives me chills sometimes

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thinking about the good that we're doing

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and giving information to people to empower them.

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Well, it's really, really important,

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particularly because folks often struggle I think

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to get that kind of detailed information

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from their personal ophthalmologists.

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There's just sometimes not a lot of time

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during that doctor visit,

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so it's wonderful they have this resource.

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There's actually a link

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where you could access all of this too.

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It's an offshoot of our main website.

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So it's brightfocus.org/macularchats.

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That's B-R-I-G-H-T-F-O-C-U-S.org/M-A-C-U-L-A-R-C-H-A-T-S.

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Wonderful, it should be mentioned,

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I believe you have glaucoma chats as well.

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Now because you also focus on Alzheimer's research,

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are there Alzheimer's chats too?

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We don't have an Alzheimer's chat.

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We actually have something called Zoom In On Dementia.

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So it's a Zoom meeting,

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so you can go in

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and sign up on that.

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With the Zoom In On Dementia,

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it's not a phone call where we call you

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like for the glaucoma chats

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and the macular chats.

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It's a you sign up

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and you'll be either emailed

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or texted a Zoom link.

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So obviously someone would have to have

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Zoom on their computer.

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Sure, really interesting.

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Now I just wanna pivot a little bit

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and just ask you to talk very briefly if you can

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about a newer program that I think you have called

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the Age-Related Macular Degeneration Community Circle.

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It looks really interesting.

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I wonder if you'd just care to talk about it briefly?

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Yeah, that's another program

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or service that we offer that we're especially proud of too

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and it's all about affected individuals helping each other

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and supporting each other.

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I guess in a way this almost goes

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hand-in-hand with macular chats

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and that it enables people to get together

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and help each other.

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So it's not as structured as the chats.

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It's basically getting together every month

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and discussing whatever topics are relevant for them.

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So maybe there's something that came up in the news,

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or the need to ask about caregiving,

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or what transportation do you use or whatever,

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and we have someone who is a BrightFocus staff member

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who's just on there as a moderator

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and a resource for everybody.

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But it's directed, the content

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and the familiarity I guess

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and the bonding between people is all directed

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by people who go on that program.

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Oh, that sounds great.

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Is that also a monthly event or a weekly?

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Monthly, yep.

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And how do folks join that?

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I don't have it on hand,

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but it also is a link on the website.

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I'm sorry I don't have that right now.

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<v ->Yeah, no problem, we'll make sure we get that link

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and that'll be in our show notes,

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so that'll be fantastic.

326
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Great, great, thank you.

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Diane, this has been really interesting.

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Is there something that you'd like to tell us

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about the macular chats

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or about BrightFocus that I haven't asked about?

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Well, I mean, that's really interesting.

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I mean, what I wanna do is kind of put it on you and Hadley

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and how a partnership between our organizations,

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I'm really glad that we met each other

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'cause I know that it's,

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and I'm gonna actually highly encourage people to go

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and listen to your chat on low vision.

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I think that's one thing that a lot of ophthalmologists

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and eye care professionals

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don't think to refer people to go to low vision specialists,

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and I think that's very, very important.

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No matter what level of vision issues that you have,

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you can always do something to maybe improve your vision

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or quality of life.

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So I think that our two organizations

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kind of go hand-in-hand

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and we would love to promote you as well

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because both of our expertise are complimentary.

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<v ->Yeah, I totally agree

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and there's lots of people in need out there,

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so any kind of partnerships that organizations like ours

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can do are gonna work for the greater good.

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So I'm at the end of my questions, Diane.

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I think this has been really interesting

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and I enjoyed participating in the one chat with you,

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and I really recommend anybody who's listening right now

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to sign up for the macular chats.

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They're really, really great

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and as you said,

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they put a lot of tough medical information

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into really understandable terms

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which is just a huge, huge thing for folks.

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So thank you very much for joining us today.

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It was really great conversation

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and not only did I also want to mention

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that we have the chats,

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but we also have other materials.

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So you can go to our website and download PDFs

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and maybe use your reader to read out the materials

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on what is macular degeneration,

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what are clinical trials.

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But you can also call our info number 1-800-437-2423,

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and you can call that

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and just ask someone to mail the information

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to you about macular degeneration free of charge

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and or sign up for a quarterly newsletter.

377
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Boy, that sounds really helpful

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and I'm just thinking out loud here.

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I would think a lot of this information

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would be really great to have before your next doctor visit.

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In other words, having information from you folks

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to empower you to ask questions of your own ophthalmologist

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would be really, really advantageous.

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Yes, there's even a sheet that you can ask for,

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"What Are The Top 10 Questions to Ask My Ophthalmologist?

386
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Fantastic, that's really, really valuable.

387
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Yes, yes, so yeah, go on our website

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and explore and yeah.

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So anyways this has been so amazing to talk with you

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and thank you for inviting me.

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Well, thanks for being with us.

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(light music)

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Share your thoughts about this episode of "Hadley Presents"

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Send us an email at podcast@hadleyhelps.org.

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That's P-O-D-C-A-S-T@hadleyhelps.org

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or leave us a message at 847-784-2870.

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