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Can Ocular Melanoma Be Hereditary? Danny Powell’s Story & the BAP1 Gene | The Eye Believe Podcast · The Eye Believe Podcast

0:03
hey everyone
0:03
I'm Megan with the Eye Believe Podcast
0:05
and we have another patient story
0:07
this one is a super special one
0:08
because it's a super rare one
0:10
so please welcome to the podcast
0:11
Danny Powell
0:13
hey how are you doing
0:15
thank you so much for being here
0:17
I'm really excited about this one
0:18
because you've got a lot of great information
0:20
that is kind of hard to find
0:23
so this is gonna be really cool
0:24
so Danny
0:25
explain to us a little bit about how you got diagnosed
0:29
what was the beginning of your journey
0:30
so back in I guess
0:33
about 2017 um
0:36
I went to my to my optometrist
0:39
that I go to every year for routine eye exam
0:42
and at that time
0:43
she told me that there was this spot in my eye
0:47
in my right eye and she said it's just a freckle
0:50
she said a lot of people get them
0:53
um she said they're really common
0:54
she said I'll just kind of
0:56
just kind of watch it you know
0:57
when you come each year and so she doesn't um
1:01
she doesn't actually do uh
1:03
eye dilation but she does retinal imaging so
1:07
so retinal imaging you know
1:09
um insurance doesn't pay for it
1:11
but I paid the I think it's like 25 or 30 bucks
1:15
and so I pay for it you know
1:16
each year when I go
1:18
you know
1:18
so I just really didn't think anything more about it
1:21
so fast forward to 2021
1:25
you know she had checked it every year between the
1:27
you know um
1:27
each year that I went to the
1:29
to the optometrist 2021
1:32
she told me she said I
1:33
you know she said
1:34
the spot in your eye she said
1:35
there's a a little bit of a change in it
1:38
she said and
1:39
I don't have the equipment
1:41
to be able to tell you what it is
1:44
so I need to send you to
1:45
Duke Eye Center so that they can check it out and
1:48
and just see what it is and so
1:51
you know I
1:51
I asked her at that time and I said
1:53
well what
1:54
what could it be and she said
1:56
well she said
1:57
best case scenario it's nothing
1:59
she said worst case scenario it's
2:01
it's ocular melanoma and of course
2:04
I was just kind of blown away
2:05
you know cause I'm
2:07
you know probably like most people I've
2:09
I've heard of melanoma but I
2:10
I didn't know you could get it in your eye
2:13
and so and I told her that
2:15
and she said yes
2:16
she said I've been practicing for about 15 years
2:20
and she said I've seen
2:21
she said I've only seen one other
2:22
one other patient um
2:25
with uh
2:26
with ocular melanoma so I was like
2:29
well okay
2:29
you know y'all just call me
2:31
you know when you set up the appointment and
2:33
and you know and
2:34
and then I'll go and she was like no
2:36
we're gonna make the appointment right
2:37
now
2:37
so you know
2:38
so she went she made the appointment
2:40
she made me an appointment with a uh
2:41
with a retinal specialist
2:43
and so
2:45
um you know
2:46
a few days
2:48
um after she had made the appointment
2:50
with the retinal specialist um
2:52
I got an email and said
2:53
that they was going to refer me to a ocular oncologist
2:57
uh Doctor uh
2:58
Doctor Materin at Duke Eye Center
3:00
and they said that way
3:01
just in case you know
3:03
there is anything we can get you some
3:06
some faster answers so I was like okay
3:09
so that was like
3:11
in July of 2021 so couple weeks later um
3:16
early August they sent me
3:18
you know to Duke um
3:20
and Doctor Materin told me
3:22
you know he said
3:22
I do see a very small ocular melanoma in your right eye
3:28
and he talked about the treatment options um
3:31
and he said your best option
3:33
is probably going to be the plaque brachytherapy
3:37
so I agreed to that um
3:38
end of August we did the um
3:41
the plaque breaking therapy
3:43
they left it in for four days
3:45
and then they took it out
3:47
when they did the biopsy or when they
3:49
you know um
3:50
did the the plaque brachy therapy
3:53
they did a biopsy also that uh
3:56
Castle um
3:57
did and so it came back as a class 2 uh
4:01
prame negative um
4:04
tumor so
4:05
you know so because it was class 2 um
4:09
he had me go to a medical oncologist
4:13
you know he wanted the medical oncologist to follow me
4:16
for metastasis to
4:18
to the liver or the lung
4:20
so you know
4:21
I started my appointments
4:22
you know with the
4:23
with the medical oncologist
4:25
you know that's kind of where things started at
4:58
well then
4:59
you know I think it might have been
5:02
uh maybe sometime in 2022
5:06
I had heard stories that my grandmother
5:11
um well
5:12
I knew my grandmother I knew she didn't have one
5:14
that one of her eyes was gone because she wore glasses
5:18
and and I had only ever seen pictures of my grandmother
5:22
she died before I was born
5:24
but she had a tinted lens on her glasses
5:27
and I just never really thought much of it
5:29
you know I heard my mom say that
5:32
you know I had heard different stories that
5:34
you know that she had gotten kicked in the head that
5:37
you know that she had another type of cancer
5:39
that spread to her eye um
5:41
there have been several different stories so well
5:45
by this time
5:46
you know when I was diagnosed with
5:48
with the um
5:48
with ocular melanoma my mom had already
5:51
she had already passed away
5:52
she passed away in 2018
5:54
you know so
5:55
once we started doing some research on my grandmother
5:59
because she did have this type
6:01
you know
6:02
this cancer that we thought maybe we knew what it was
6:06
but we wasn't exactly sure
6:08
we started looking at the
6:10
you know doing some family history
6:12
well come to find out um
6:14
on her death certificate it says that she died from um
6:19
from liver failure that was a result of liver cancer
6:23
that was caused by ocular melanoma
6:26
so at that point we was like
6:28
you know we already knew that
6:30
that ocular melanoma was rare
6:32
and then we was like wow
6:33
you know we've got
6:34
now we've got two people in the family that has had it
6:38
when only you know
6:39
six people out of a million get it
6:42
so then you know
6:43
so I went you know
6:44
and I told my my medical oncologist about it
6:47
and I showed him her death certificate
6:48
and he said well
6:50
he said this is very interesting
6:51
he said we want to do some genetic testing
6:55
so we did so they sent me to
6:57
to Duke Genetics at that time
6:59
you know when they did the
7:00
the genetic test in it Duke um
7:03
it came back the BAP1 gene
7:05
came back as a variant of uncertain significance
7:09
so which they told me basically
7:11
it was kind of inconclusive
7:14
so I was like well
7:15
you know well okay
7:15
that was like you know
7:16
you don't need to do anything else further
7:18
nobody in your family needs to be tested
7:21
or anything like that so
7:23
so I just kind of you know
7:24
continued on about my way
7:26
you know going to Duke
7:27
you know every six months
7:28
to my ocular oncologist every three months for my scans
7:33
and so um
7:36
I guess in probably
7:39
late 2023 maybe um
7:43
I got a call from Duke and it said that um
7:48
that my tumor had been reclassified
7:50
as being a likely pathogenic
7:53
they said so most likely you
7:56
they said it seems like you inherited this um
7:58
BAP1 mutation and they said
8:01
and what that does you know
8:02
by you being positive for the BAP1 mutation
8:06
they said it makes you more susceptible to
8:09
to several cancers they
8:11
you know they said namely um
8:14
ocular melanoma which I already have
8:17
and then there was renal cell uh
8:19
carcinoma
8:21
uh mesothelioma
8:23
and um
8:25
there was one more
8:26
I can't think of what it is right now
8:27
but it was uh
8:28
you know those cancers
8:30
it makes me more susceptible to those cancers
8:33
so they suggested that I go to NIH in uh
8:39
Bethesda Maryland to um
8:40
to take part in a clinical study
8:43
that's where I'm at now you know
8:45
I went last year so I am part of the
8:48
of the BAP1 study there
8:50
and basically what I'm doing is I go
8:55
I'll go every two years for MRI's of my um
9:00
you know the brain
9:01
um the liver
9:02
the lungs and the pelvic area
9:05
and so coming up in probably next March or April
9:10
I'll have to go back just for my um
9:12
opthamology exam
9:14
so you know
9:15
so once we found out this information
9:17
about this BAP1 gene mutation
9:19
then it kind of all started
9:21
you know it kind of started clicking
9:24
because it was like okay
9:26
I had you a ocular melanoma
9:28
my grandmother did
9:30
my mom
9:31
she had three different types of cancers in seven years
9:38
the only one
9:39
the only one that they know of right now that
9:42
that may be um
9:43
connected to BAP1 is she had bladder cancer
9:46
well I also have a sister that has uh
9:50
had bladder cancer
9:51
I had one uncle that had bladder cancer
9:56
I know of two uncles that um
9:59
had kidney cancer and several other of my um uncles
10:05
my mom had eight brothers
10:06
she was the only girl so um
10:09
several of them had skin melanoma
10:11
so skin melanoma is the other one that goes along with
10:15
with that one
10:16
now it's kind of like OK
10:17
so we've got all this all this family history
10:21
so now we kind of have a pretty good
10:24
you know pretty good idea of
10:26
of why so
10:28
you know I have um
10:29
I have talked to my I have
10:32
I have two half sisters and a half brother
10:35
from my mom's first marriage
10:38
one of my half sisters has been tested
10:40
she tested negative
10:42
and my other sister that has the bladder cancer um
10:46
she has not been tested um
10:48
at this point um
10:50
but I have talked to uh
10:51
to my immediate family members about testing
10:55
you know the decision is kind of theirs as to
10:58
as to whether they want to be tested
11:00
based on me being BAP1 positive
11:02
well
11:03
so it it doesn't
11:05
they said it doesn't skip generations so
11:08
so they feel like
11:09
the gene went from my grandmother to my mom
11:13
and then my mom passed it to me
11:16
and so then there was a 50% chance that
11:19
that my and my wife's
11:20
two two boys could also be BAP1 positive
11:24
so we've had them we had them tested earlier this year
11:27
and thankfully both of them are negative um
11:31
for the gene so
11:32
so it stops with them
11:34
as far as my family is concerned
11:36
it uh
11:37
it stops with them so I don't have to
11:39
so if they have kids
11:40
I don't have to worry about my grandkids
11:41
having ocular melanoma not inherited anyway
11:45
you know now
11:46
you know they could get it
11:47
you know through um
11:49
you know just like any
11:50
any um
11:52
other person but uh
11:53
but they don't have to worry about
11:55
they don't have to worry about it being inherited
11:57
and going through all the early screenings
11:59
and and things like that so
12:02
so that's kind of kind of where I'm at right now
12:04
so I know it's just
12:05
it's a lot um
12:07
it's a lot to tell
12:08
but that's that's kind of where we are
12:10
well that is a lot
12:11
and I want to say
12:12
I'm sorry about your mother and your grandmother
12:14
and also so many cancers in your family
12:17
that must have been so hard
12:18
I mean yes
12:20
yeah that's a lot
12:21
it was just yeah
12:22
it you know
12:23
it was it was a whole lot
12:24
but we never really thought about
12:26
you know anything being genetic
12:28
we just kind of thought well
12:29
that's just kind of that's just kind of the way it is
12:32
and and
12:33
you know and so we just kind of
12:34
just kind of moved on so
12:36
but it's kind of all starting to
12:38
kind of
12:39
starting to make sense a little bit more at this point
12:42
yeah
12:42
cause you typically don't hear about cancer as genetic
12:45
if there's a cluster you think maybe environmental
12:48
maybe there's something going on in the area
12:50
but to find the gene I mean that's
12:53
that's kind of a big deal to figure that out
12:56
mm hmm yes
12:57
so that's part of what makes Danny so rare
12:59
is this BAP1 and ocular melanoma
13:02
so I mean you're
13:03
you're in the rare of the rare category unfortunately
13:06
mmm hmm yeah yeah yes yep
13:09
and so it's um
13:11
and you know it's
13:12
and it's kind of hard to
13:14
uh it's kind of
13:15
it's kind of hard to explain ocular melanoma
13:18
you know to
13:19
to begin with and
13:21
you know people
13:22
people that have ocular melanoma
13:23
they know exactly what I'm talking about
13:25
you know you go and you have
13:27
you know they say you have cancer
13:28
and you have some you know
13:30
some radiation treatments or chemo treatments
13:32
which are not which are not good either
13:34
but you start telling them about them putting this
13:37
this radiation plaque in your eye
13:39
and then they leave it in there for a few days
13:42
and then they take it out and
13:44
and then you know
13:45
if they
13:46
people kind of look at you like you have two heads
13:49
or something and so
13:50
so you I mean
13:51
you have to have to
13:52
you have to stand there and have like
13:53
a 15 minute conversation with them to explain
13:57
to explain what you have and then
14:00
and then once I throw the
14:01
the BAP1 component in there
14:04
then it really gets complicated at that point
14:07
but you know
14:07
but right you know
14:08
right now we're just
14:09
you know I'm thankful that my kids
14:11
you know that mine and my wife kids
14:13
um that they don't have it
14:14
so that they don't have to worry about it
14:16
so that was a big relief when we found that out
14:19
that's huge I mean
14:22
what more can you ask for at this point
14:24
like that's huge
14:25
yes yes
14:27
and so you know
14:27
for me
14:28
I read a lot of stories on Facebook and
14:31
and my heart just goes out to people
14:33
I've known so many people who
14:36
you know they've lost their vision
14:38
you know they've
14:39
they've had metastasized and thankfully for me
14:43
my tumor was it was 2.1 millimeters so
14:46
so really really small
14:48
and so
14:49
and it was about as far away from my optic nerve as
14:52
as it can get and still be inside of my eye so
14:57
so I've lost very little of my vision
15:00
you know so I've been very lucky
15:02
and you know
15:03
my eye doctor she was just awesome for
15:05
for not sitting on it and waiting
15:07
you know as soon as she seen the change in it
15:10
she was like I can't tell what this is
15:12
i'mma send you to Duke and
15:14
and we'll kind of see see what it is from there so
15:18
so I was I was very lucky
15:20
you know I was very lucky in that aspect also
15:23
that is amazing and
15:24
the fact that you paid extra for those retinal scans
15:28
I mean you did your due diligence
15:30
I think a lot of times
15:31
you hear people find a tumor and they're like
15:32
I never went to the eye doctor
15:33
cause I didn't need glasses
15:34
so kudos to you
15:35
for doing what you were supposed to be doing
15:37
and finding it so early that's really awesome
15:40
yeah
15:40
I'm like well it's
15:41
it's worth the the 25 or 30 dollars to pay for it
15:44
just to make sure you know
15:46
there's nothing going on
15:47
cause I've worn glasses since I was eight years old so
15:52
it was just important for me
15:53
you know to do that
15:55
and
15:55
you know we pay for it for my wife and for my kids also
15:59
so my my wife
16:00
she wears glasses my
16:02
my oldest son he wears glasses
16:04
and my youngest son he used to
16:07
but he doesn't have to now
16:08
but we're gonna take him to the eye doctor every year
16:12
just to have an exam just to
16:14
just to be sure so
16:15
so I try to encourage people
16:18
you know that
16:18
that don't wear a corrective lenses to still go
16:22
you know to the eye doctor and have your eyes checked
16:25
I mean because there are other things
16:26
you know glaucoma um
16:29
you know different things that can go wrong so
16:31
so um
16:32
but I always try to encourage that
16:34
yeah I think that's such a huge misconception
16:37
that you don't have to go to the eye doctor
16:39
if you see fine
16:40
and that's what we're out here trying to
16:42
you know advocate for
16:43
is let's get those eyes checked and dilate them
16:45
or get the retinal scan do something because yeah
16:49
so many people think oh
16:50
I don't need an eye exam
16:51
and now if you are wearing contacts or glasses
16:54
you can order online
16:55
and they have an online eye exam you do yourself
16:58
that basically is you just checking a box
17:01
saying hey yeah
17:01
I still see the same
17:02
and they'll renew it for a whole another year
17:04
you don't even have to go to the eye doctor
17:05
so that's actually getting a little scary
17:08
oh yeah
17:09
yeah yeah
17:09
that is yeah yeah
17:11
so even people with glasses are starting to not go
17:14
so yes
17:15
please please keep going to the eye doctor
17:17
be like Danny
17:18
go to the eye doctor
17:19
yeah yeah
17:20
so yes
17:21
I'm I'm definitely going to
17:22
you know continue to go
17:23
you know every
17:24
every year and it's also well
17:27
one thing I did forget to mention is
17:29
you know I did
17:30
you know talk about that
17:31
me being in the in the clinical trial at uh
17:35
at NIH
17:36
one of the things that I had read um
17:38
online and
17:40
and they actually looked for this um
17:42
at NIH is um
17:45
there is these places they had a patient there um
17:49
a few years ago
17:50
and he noticed some abnormalities in his fingernails
17:56
and so there was like
17:57
a place up under one of his fingernails
18:00
and it was just kind of like a
18:01
like a spot um
18:03
I think they call it a tumor
18:05
but it's not really big but it's just like
18:08
right up under the nail bed at the top of it
18:12
at the top of the fingernail
18:14
and then the nail has like
18:15
a white line that it runs from top to bottom
18:20
where that where that spot is
18:22
you know he just kind of casually made mention of it
18:25
and they looked at it at NIH
18:27
and when they did they went back
18:30
and they started looking at their other patients
18:33
and they they started seeing that it was
18:35
it was very common this condition was very common
18:39
in people with the BAP1 mutation
18:42
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19:00
when I went last uh
19:01
April beginning of may
19:03
they looked at my nails and they said that I have like
19:05
three or four places
19:08
um in my fingernails that um
19:10
that they can see
19:11
they said you have that characteristic also
19:14
as most patients do
19:17
and isn't it crazy that they just found it
19:19
by total happenstance that somebody was like hey
19:22
I got this weird thing and they're like oh
19:23
maybe that's related I mean
19:25
it just goes to show
19:27
that we are still so early in all of these things
19:31
and it's unfolding so quickly
19:33
like the advances we're making
19:35
and the discoveries and the new medicines
19:37
like it's
19:38
it's coming guys
19:40
uh huh yes
19:42
it's definitely been been an adventure
19:44
and you know
19:46
you know I get a lot of information
19:47
you know from A Cure In Sight
19:49
y'all helped me out you know
19:50
a great deal um
19:52
as far as you know
19:53
finding resources connecting with people
19:56
when I was first diagnosed
19:58
melody she connected me with a person that lives here
20:03
in the same county um
20:05
that I do
20:06
and you know
20:06
she said Danny
20:07
she said if you want me to
20:08
she said I'll connect you with her
20:10
she said she has ocular melanoma
20:12
she said maybe y'all can just kind
20:14
she said since y'all live so close to each other
20:17
he said maybe y'all can just kind of connect and
20:19
you know and share stories and what not
20:21
and so and I was really thankful for that because
20:24
and come to find out you know
20:25
the the girl
20:26
she only lives about three miles from where I live at
20:29
unfortunately she
20:31
she used to come to to um
20:33
ocular melanoma um
20:34
liver metastasis uh
20:36
last year so um
20:38
unfortunately so
20:40
you know she was a good resource um
20:42
for me you know
20:43
just to just to have someone to talk to to
20:46
to understand you know
20:48
to be able to understand
20:49
you know when you're talking about testing and
20:52
and different things
20:53
it's good to have someone to talk to that
20:55
that understands what you're
20:56
what you're going through
20:57
so
20:58
yeah cause it is such a unique situation to be in
21:02
mm hmm yes yeah
21:04
and there's
21:05
and there's so many things with ocular melanoma
21:07
that other cancers are different not
21:09
not that they have or don't have or it's
21:11
you know it's not a competition
21:12
but it's just so different
21:14
like I'm sure you probably also get you look fine
21:18
yes all the time
21:19
that's a tough one for ocular melanoma too
21:23
yes yes
21:24
I you know I yes
21:25
I have people tell me all the time
21:26
they say well
21:27
they say well
21:27
you don't look sick and I say
21:29
well no
21:30
I said and I feel good
21:31
mentally, you know I'm
21:33
I'm always struggling you know
21:35
with this
21:36
you know just kind of wondering okay
21:38
is the metastasis going to show up later on
21:41
you know when
21:41
when is it going to happen
21:43
and so then it goes back to when I have my
21:46
you know when my scans are coming up and
21:48
and things like that I always
21:50
always get really nervous
21:52
you know at times when it's scan time so
21:55
because I'm just kind of waiting
21:57
you know and I hope it never comes
21:59
but I always worry about the day
22:01
that I'm gonna go in there and
22:03
you know and I have my scan done
22:04
and they say you know
22:06
they say Danny
22:06
we see this spot
22:08
we see this spot on your liver
22:09
and it's something we need to look at further
22:11
but I mean thankfully
22:13
you know it has been
22:14
has been four years um
22:16
so far and
22:17
and so far my scans have looked really good so
22:20
so um
22:21
but it is something it is something that you
22:23
that you live with every single day because
22:26
because you just you just never know right
22:29
well are there any words
22:31
that you would like to give to the community
22:33
maybe somebody who's new and coming in
22:35
that could gain some wisdom
22:38
or insight from your experience
22:39
just um
22:41
I mean I guess the only thing I can say is uh
22:44
well now
22:45
of course you know
22:46
when I first heard the word ocular melanoma
22:49
what was the first thing I did
22:50
I do I did probably what most people do
22:53
and go look at Google and start researching and
22:57
and you know
22:57
and there's you know
22:59
you can find some good information there
23:01
but you have to be careful
23:02
because there's also a lot of outdated information um
23:07
there also so you have to kind of be careful what
23:10
you know what information that you're
23:12
that you're looking at
23:14
and just know too that um
23:16
one thing that I found out is
23:17
everybody's situation is different
23:20
I've heard some people you know
23:22
say that when they had their plaque
23:24
their plaque brachy therapy
23:26
you know they had it done and
23:27
and after two or three days
23:29
they went back to work you know me
23:31
I was out of work for like
23:32
six weeks
23:33
maybe my threshold to pain is
23:35
is not as good as some other people's
23:37
but um
23:38
there are differences there
23:40
you know as far as how long your double vision last and
23:43
you know how long does the pain last
23:46
and so everybody's story is different
23:47
don't just look at one person's story and say okay
23:50
this is what's gonna happen
23:51
because there's a wide range
23:53
there's a wide range of possibilities that can
23:56
that can happen so
23:58
and also to go get those eyes checked
24:01
you know every year
24:02
you know even if you think you don't need
24:04
even if you think you don't have a problem
24:07
still go get them checked
24:08
so it could it could uh
24:10
it could save your life I mean
24:11
I know that sounds that probably sounds cliche but
24:15
but it literally could save your life
24:18
absolutely wise words
24:20
well thank you
24:21
is there anything that we didn't cover
24:22
that you would like to cover before we wrap up
24:25
nothing that I can think of right now
24:27
but if anybody does you know
24:28
if you feel like you want to contact me
24:30
ask me any questions about
24:31
about one I'm on Facebook
24:34
Danny Powell I live in Timberlake
24:36
North Carolina so you can look me up and
24:39
and I'll be glad to help you out anyway that I can
24:42
fantastic thank you so much Danny
24:44
thank you for being here and sharing your story
24:45
and just being a resource for people
24:47
that's just so inspiring and we really appreciate you
24:50
and thank you thank you for having me
24:52
I really appreciate it
24:53
of course and to everyone watching
24:55
thank you so much for watching
24:57
this podcast wouldn't function without the views
24:59
so please like and subscribe and leave us some comments
25:02
leave Danny a comment
25:03
let him know what you thought of his story
25:05
that would be very appreciated
25:07
and a huge thank you to our sponsors
25:09
we can't do this podcast without our sponsors
25:11
so they are everything to us
25:13
and they make this podcast function
25:15
they bring all of this free education to you
25:18
so check out their websites
25:19
and see what they have to offer
25:21
they're great great people
25:23
and if you come to any of our events
25:24
you'll
25:25
you'd likely find representatives from the companies
25:28
I think they were all at Eye Believe
25:29
but they'll pop up kind of at the 5 k's and all over
25:32
and they're wonderful if you see any of their booths
25:34
please talk to them they love talking to you guys
25:37
they wanna hear your feedback
25:38
I think that's the biggest thing I've Learned
25:40
with working for A Cure In Sight
25:41
is there's this whole stigma of like oh
25:43
pharma is scary they're not
25:45
they're the most wonderful people
25:46
please talk to our pharma reps
25:47
they're lovely
25:48
and support our sponsors because they're supporting us
25:51
I was at the Eye Believe
25:52
seminar that y'all had in Raleigh
25:54
just a couple months ago you know
25:56
I was you know
25:57
thankful that it was right here
25:59
close to home um
26:00
for me so I was just really thankful for that so
26:03
so if you're out there
26:04
and you ever have the opportunity
26:06
to go to one of those seminars
26:08
I highly highly encourage you to go
26:11
absolutely let's
26:12
let's just talk about Eye Believe for a quick second here
26:15
we just had it in Raleigh
26:16
it was fantastic we do move them around the country
26:19
it's in a different location every year
26:21
and the reason is because
26:22
number one we'd like to be able to be close to everyone
26:25
so everyone has an opportunity to go
26:26
if you don't travel well but also
26:29
we do a hosting physician
26:30
so depending which doctor is going to host
26:33
depends where we go
26:34
next year is going to be Texas with Doctor Harbour
26:37
so Mark your calendars I'm not sure the exact date
26:39
but it will be sometime in the fall
26:41
and they're just a lot of fun
26:44
we get all the patients together
26:46
the doctors the pharma reps
26:48
and there's a lot of education and stuff that happens
26:50
and then we end with a big old party
26:52
and it's just it's a great time
26:54
so please do come to our events
26:56
find a 5K near you anything else that we do
26:59
their Swing For Sight is in Napa every spring
27:01
it's a golf tournament that's a ton of fun
27:04
so we would love to see you guys at our events
27:06
it's awesome okay
27:08
and then another thing please go to our website
27:11
ACureInSight.org up at the top
27:12
you'll find a button to subscribe to our newsletter
27:15
please join the newsletter
27:16
we send it out once a month with a bunch of information
27:18
and we also send out an occasional email
27:20
if it's something that's very timely and important
27:23
like a update from pharma
27:24
from our buddies at Pharma
27:25
so join the newsletter please
27:27
and then also check out our cure companions
27:30
you'll find that on our website as well
27:32
that buddies up a new patient with a veteran patient
27:36
and you know
27:36
like Danny was saying sometimes
27:38
just having a veteran
27:39
who can tell you how their experience was
27:41
and just be an ear to listen and understand
27:43
it can be such a big benefit
27:44
so if you would like a cure companion
27:46
or if you'd like to volunteer to be one
27:48
you can find that on our website
27:50
and then check out our zoom groups
27:52
every Tuesday
27:53
there's a regular room and a metastatic room
27:55
depending which room you feel comfortable with
27:57
you can connect with other omies and find a buddy there
28:00
too so we have a lot of resources
28:03
please continue to check out our website
28:05
but also follow our socials
28:07
because we are posting when we update clinical trials
28:10
when we get updates from pharma
28:11
from doctors we're gonna post that stuff on social
28:14
as well as occasional emails
28:16
so the best thing you guys can do
28:18
is follow all the socials
28:19
and sign up for the newsletter
28:21
and then just start showing up
28:22
and meeting other people and connecting
28:24
it will make a difference I promise
28:28
all right everyone
28:28
we're gonna sign off and we will see you next week
28:32
thank you