Having access to the latest info
and research on your eye condition
in a way that's approachable
and easy to understand can make all the difference.
In this episode, we learn about the BrightFocus Foundation
(light music)
from its Vice President
of Scientific Affairs, Diane Bovenkamp,
and Hadley's Chief Program Officer, Ed Haines.
I'm Ricky Enger, and this is "Hadley Presents."
Welcome to the show, Ed and Diane.
It's really good to have you both.
Thanks, Ricky, really appreciate it.
This is gonna be a lot of fun.
Glad to be here.
Ed, I know you're pretty familiar with BrightFocus
and in fact you've had a chance
to do a presentation for them.
So I imagine that you have
some really good questions for Diane today,
so yeah, let's jump right in.
Thanks very much, well, Diane, first of all,
let me just thank you for being with us today.
We're really excited to talk about BrightFocus
and I think it's a wonderful organization.
So if you don't mind,
I'll dive right in with my first question.
If you could just tell us a little bit about BrightFocus,
your history and the mission of your organization.
Thank you so much.
This is so exciting to be here with your organization
that's been around for 100 years
that's doing good in the community, I'm so excited.
Yeah, so BrightFocus Foundation
has been around 51 years now
and our primary focus is to fund research around the world
to find cures for macular degeneration, glaucoma,
and Alzheimer's and related dementia.
So we funded $300 million for the past 50 years.
Wow.
Yeah, in 25 countries with more than 1,900 grants
to more than 6,300 scientists.
And yeah, and so we basically believe
that there's no geopolitical border that we can't go
and hunt down the next innovative idea to maybe,
maybe that next idea could find the cure.
And the second thing that we also do
is we translate all of the research that we fund,
and actually that's around in the world,
into lay language for affected families
so that you can understand
and learn ways that you can become empowered
to address and keep healthy.
Boy, Diane, that's so important.
I've worked with so many people
that really don't understand their diagnosis
and don't understand the implications,
and I think I read a statistic once that says
about 25% of people with macular degeneration
don't even really know the name
of the condition that they have.
Wow.
So that's just fantastic that you're
not only working with the medical community and researchers,
but then translating the results
of all of that research into language
and information that people
with a diagnosis can understand, that's just wonderful.
So sounds like you're serving almost two audiences.
You're serving the medical community
who's doing the research
and then it looks like you're also really trying to focus
on the folks who have the diagnosis as well.
So to that end,
you have these great chats
and I think you have chats
related to macular degeneration and glaucoma,
and it was a lot of fun to be on one of your chats
just a little while ago.
So I wonder if you could talk about these.
Why did you start them
and what was your goal?
Yeah, we started, believe it or not,
10 years ago, these chats,
and they're really cool
because just like this interview,
they're audio-only, they're friendly for people
who are visually impaired,
and people can sign up
and it's set up so that on the day of the chat,
a telephone will call you.
You just have to pick it up
and listen to it.
It's really kind of very convenient
and it happens every month,
and the reason why we did it was exactly like what you said,
so that people can know more about their condition
and to learn about ways to become empowered.
I just recently had last week a chat
that I did with Dr. Sheldon Rowan
from Tufts University in Boston
and we talked all about lifestyle modifications
and the microbiome, the bacteria in your gut
can actually affect your eye disease, if that makes sense.
And so yeah, so there's all these things
that you can do to become empowered
and maybe take all these questions,
and there's a transcript every week
and we push it out on many different medium
that you could actually print this out
and bring it to your doctor
and ask them about it.
So yeah, it's all about trying
to spread the information and become empowered.
Well, that's fantastic, so people sign up.
They get a phone call so there's no barrier there.
They don't have to learn how to use their phone
if using the phone is difficult for whatever reason,
for vision-related reasons.
Is there any opportunity for interaction?
So can people ask questions of the speakers
who are featured in your chat?
Or how can they provide feedback?
Absolutely, there's many different ways
for feedback 'cause that's what we want.
It's kind of like Stephen Covey sharpening the saw.
We always want to try and improve.
And so not only can people ask questions before the talk,
and actually I encourage people to do that
if you do go and sign up
because then I put that on my list if I'm the moderator
of questions that I can maybe ask the speaker.
But then also if you think of something
in the middle of the chat,
they can press a button,
you can go and talk to a live person,
tell them your question,
and then get back onto the call.
And then also at the end of the talk,
we always ask people with a simple press one, two, or three,
press a number, did you like this chat?
Was it helpful or was it not helpful?
So I think that it's very important.
We don't wanna do podcasts
or chats just for the sake of having chat.
It has to be serving the community.
No, I totally agree.
Now how often do these chats happen?
Is it once a month, a bi-monthly?
And how do you keep current
and interesting with regard to your subject matter?
It sounds like you have a lot of researchers to draw on.
Are those primarily the presenters?
-: Yes, so we've done,
in the 10 years, we've done 115 episodes to date so far
and you can access all of these on our website,
but it's monthly, it's the last Wednesday of every month
just so that it's very easy for people to remember
and then for the inspiration,
yeah, so it comes from many places.
So I'm the chief of the Scientific Affairs Team,
so we go around the world
or virtual to different scientific conferences
so we know that there's hot topics.
We know thousands of researchers around the world,
as well as clinicians
because we fund research
that goes basic, translational, and clinical.
And we also do have our Scientific Review Committee,
our advisors, that they can give us advice
on what's the hottest topic.
And we do, when we'd go to say ARVO or ICER
which are two major vision conferences,
just the topics there
and we see what are all of the pharma companies
and biotech companies that are in the exhibit hall
so we can keep track
of what are the clinical trials going on
'cause I mean, that's another topic
to try and keep people abreast of what new treatments
might be on the horizon.
So yeah, I don't think
we'll ever run out of things to talk about
because I find that,
yeah, you probably find this too,
that people's curiosity is unquenchable.
Yep, absolutely, I'm curious now myself.
If you had to name five episodes
that received the most interest from your audience,
what would be a few of those?
Yeah, so I think that we do tend to repeat
some of those topics with updates every few years,
but I think the number one is when we bring on a clinician,
scientists that tells you what's the latest in clinically
and medically dealing with my disease.
I mean, I think that's number one.
The one that we just had right now,
we had 450 live listeners
and it'll be interesting to see,
but normally the ones on lifestyle, right?
The food, nutrition, it's only been proven,
there've been enough scientific proof
in the last five or so years
for people to say, ah, you know what?
Exercise is good for trying to either prevent
the onset of the disease.
Exercise and nutrition is great for either preventing
the onset of the disease or maybe progression.
And also with macular degeneration,
you know all about
the AREDS clinical trial and the Nutrition.
That one I guess is a third type of trial
people want to keep on top of that
and just as a summary,
it's a clinical trial that was led
by the National Eye Institute,
Dr. Emily Chu and others,
that shows that a specific combination of vitamins
and antioxidants can help if you have intermediate dry AMD,
that it might prevent the progression to wet AMD, and yeah.
I see, that's exciting.
Yeah, yeah, yeah, so that's the third
and I think that the fourth and fifth type,
I did one chat in glaucoma
and one chat in macular degeneration on stem cells,
what's the latest in treatment within the last year.
How to regenerate the eye
even if you fully lost your vision,
there are clinical trials
and research on the horizon that maybe you could try
and get your vision back.
So those were really exciting so you could look that up.
I can imagine.
Yeah, and then I think just the fifth one
is what's going on with clinical trials,
upcoming clinical trials?
I think those five,
and you can go in and find them.
But what I understand is on average
we have 600 live listeners every month
for the macular chats
and then nearly 10,000 recorded listens
on average per month.
Wow, wow.
Yeah, yeah, I'm amazed.
I mean, we started out 10 years ago
with 100 people live,
so all of our vision chats are available to listen
as podcasts on the go,
on YouTube, Spotify, iHeartRadio,
Amazon Music, Apple Podcasts, and Pandora.
Fantastic, I was just gonna ask
how you access those recordings, so that's wonderful.
That's a big audience.
Yeah, yeah, and just it gives me chills sometimes
thinking about the good that we're doing
and giving information to people to empower them.
Well, it's really, really important,
particularly because folks often struggle I think
to get that kind of detailed information
from their personal ophthalmologists.
There's just sometimes not a lot of time
during that doctor visit,
so it's wonderful they have this resource.
There's actually a link
where you could access all of this too.
It's an offshoot of our main website.
So it's brightfocus.org/macularchats.
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.
Wonderful, it should be mentioned,
I believe you have glaucoma chats as well.
Now because you also focus on Alzheimer's research,
are there Alzheimer's chats too?
We don't have an Alzheimer's chat.
We actually have something called Zoom In On Dementia.
So it's a Zoom meeting,
so you can go in
and sign up on that.
With the Zoom In On Dementia,
it's not a phone call where we call you
like for the glaucoma chats
and the macular chats.
It's a you sign up
and you'll be either emailed
or texted a Zoom link.
So obviously someone would have to have
Zoom on their computer.
Sure, really interesting.
Now I just wanna pivot a little bit
and just ask you to talk very briefly if you can
about a newer program that I think you have called
the Age-Related Macular Degeneration Community Circle.
It looks really interesting.
I wonder if you'd just care to talk about it briefly?
Yeah, that's another program
or service that we offer that we're especially proud of too
and it's all about affected individuals helping each other
and supporting each other.
I guess in a way this almost goes
hand-in-hand with macular chats
and that it enables people to get together
and help each other.
So it's not as structured as the chats.
It's basically getting together every month
and discussing whatever topics are relevant for them.
So maybe there's something that came up in the news,
or the need to ask about caregiving,
or what transportation do you use or whatever,
and we have someone who is a BrightFocus staff member
who's just on there as a moderator
and a resource for everybody.
But it's directed, the content
and the familiarity I guess
and the bonding between people is all directed
by people who go on that program.
Oh, that sounds great.
Is that also a monthly event or a weekly?
Monthly, yep.
And how do folks join that?
I don't have it on hand,
but it also is a link on the website.
I'm sorry I don't have that right now.
-: Yeah, no problem, we'll make sure we get that link
and that'll be in our show notes,
so that'll be fantastic.
Great, great, thank you.
Diane, this has been really interesting.
Is there something that you'd like to tell us
about the macular chats
or about BrightFocus that I haven't asked about?
Well, I mean, that's really interesting.
I mean, what I wanna do is kind of put it on you and Hadley
and how a partnership between our organizations,
I'm really glad that we met each other
'cause I know that it's,
and I'm gonna actually highly encourage people to go
and listen to your chat on low vision.
I think that's one thing that a lot of ophthalmologists
and eye care professionals
don't think to refer people to go to low vision specialists,
and I think that's very, very important.
No matter what level of vision issues that you have,
you can always do something to maybe improve your vision
or quality of life.
So I think that our two organizations
kind of go hand-in-hand
and we would love to promote you as well
because both of our expertise are complimentary.
-: Yeah, I totally agree
and there's lots of people in need out there,
so any kind of partnerships that organizations like ours
can do are gonna work for the greater good.
So I'm at the end of my questions, Diane.
I think this has been really interesting
and I enjoyed participating in the one chat with you,
and I really recommend anybody who's listening right now
to sign up for the macular chats.
They're really, really great
and as you said,
they put a lot of tough medical information
into really understandable terms
which is just a huge, huge thing for folks.
So thank you very much for joining us today.
It was really great conversation
and not only did I also want to mention
that we have the chats,
but we also have other materials.
So you can go to our website and download PDFs
and maybe use your reader to read out the materials
on what is macular degeneration,
what are clinical trials.
But you can also call our info number 1-800-437-2423,
and you can call that
and just ask someone to mail the information
to you about macular degeneration free of charge
and or sign up for a quarterly newsletter.
Boy, that sounds really helpful
and I'm just thinking out loud here.
I would think a lot of this information
would be really great to have before your next doctor visit.
In other words, having information from you folks
to empower you to ask questions of your own ophthalmologist
would be really, really advantageous.
Yes, there's even a sheet that you can ask for,
"What Are The Top 10 Questions to Ask My Ophthalmologist?
Fantastic, that's really, really valuable.
Yes, yes, so yeah, go on our website
and explore and yeah.
So anyways this has been so amazing to talk with you
and thank you for inviting me.
Well, thanks for being with us.
(light music)
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