Latest / The Eye Believe Podcast / My 15 Years | Episode 5: Finding Community & Creating A Cure in Sight

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My 15 Years | Episode 5: Finding Community & Creating A Cure in Sight · The Eye Believe Podcast

0:05
hey everyone
0:05
welcome back to Melody's 15 years
0:08
today we are gonna talk all about community
0:10
so hi melody hi
0:14
I can't even imagine
0:15
being told that you were diagnosed with something
0:17
that you've never heard of
0:18
much less you don't know anyone else that has it
0:21
so let's get into a little bit of what it was like
0:24
to come to terms with that
0:25
and how you found a community
0:29
well it was hard
0:31
because
0:32
even though I was going to a treatment center that was
0:35
you know treats many people in North Carolina
0:39
I never met anybody
0:41
and I would go to my appointments and look around
0:43
and wonder do they have
0:45
and I tried talking to a few people
0:48
and I never ran into anybody that had ocular melanoma
0:51
so I was kind of feeling kind of lost
0:53
you know nobody understood um
0:57
people didn't understand
0:58
that I was no longer concerned with my eye
1:01
once my eye was treated you know
1:04
I still had vision issues
1:06
I I
1:07
you know I was trying to learn how to
1:10
how to manage um
1:12
with the vision issues and kind of being more one sided
1:15
well I had vision in my eye
1:17
in the beginning
1:18
it was more of a nuisance than it was a help
1:22
so people didn't understand when I would run into them
1:24
or run into something or I was extra clumsy and
1:28
you know I got the oh
1:30
but your eye looks so good
1:31
you're fine right
1:32
you're good now right
1:33
and you're like no
1:35
and you try to explain it
1:36
but they don't want to hear the explanation
1:38
they just want to hear that you're okay
1:40
so then they kind of would step back and be like okay
1:43
that's too much information
1:44
I don't want to hear about this crazy eye thing you got
1:47
so it was um
1:49
it was kind of isolating
1:51
and I
1:52
I think one of the biggest things that was hard for me
1:55
was that I knew all the other cancers out there
1:58
had great websites great support groups great
2:04
I don't know products for patients
2:06
and there was not I couldn't find anything
2:08
so one day I was on Facebook
2:10
and I stumbled upon an ocular melanoma support group
2:14
and I was like oh
2:16
let's see what this is so I joined
2:18
and all of a sudden
2:19
there's all these people just like me
2:21
and it made me feel like ah
2:24
I'm not alone I'm not crazy
2:27
and I'm not an outcast
2:30
because because you feel like that
2:32
you know
2:32
when people kind of distance themselves from you
2:34
it's like oh no
2:35
here she comes
2:36
she's gonna talk about that eye thing again
2:38
um they
2:40
they kind of avoid you so I
2:42
I kind of I was like oh
2:43
I found my people and it was
2:46
it was great to have them understand
2:49
and you could say did
2:51
has this happened to you and they're like
2:53
oh yeah
2:54
and you be like oh okay
2:55
so it's not just me it
2:57
this is a thing and I think that was kind of um
3:02
kind of the a game changer for me
3:03
when I found this other support community on Facebook
3:07
that's gotta be so weird
3:09
to just feel like you're the only one
3:11
and then all of a sudden find your people
3:12
and I'm so glad that you did find them
3:15
what kinds of things in the very beginning
3:19
were some of the things that you were kind of
3:21
bonding over
3:23
um loss of vision and the wonkiness of the vision
3:27
um the loss of independence
3:29
um some people
3:30
when they're treated
3:31
they don't have any problems with their eye
3:33
and they can drive right away
3:35
I had really bad double vision
3:37
so I had a hard time driving
3:39
and even though I patched my eye
3:43
it was still very scary to drive because
3:48
um my
3:49
I'm left side so when I would patch my left side
3:52
and you drive this whole side of you now is gone
3:57
and so you're trying to figure out
3:58
how do you change lanes
3:59
I drove a long time only in the right lane
4:02
and hoped I didn't have to turn left
4:04
I'd go around the block before I would turn left
4:07
because it was very scary
4:08
and I'm not um
4:10
I'm not a scared person so um
4:12
it was it was a whole new um
4:14
feeling for me
4:16
so to hear other people were having that same problem
4:20
uh it made me feel better
4:21
because my doctor kind of dismissed it like no
4:24
you'll be fine you'll be fine
4:25
no no
4:25
you just need to get out there and drive
4:27
you'll be fine and I'm like
4:28
but I don't think I'm gonna be fine
4:30
I think I'm going to crash and die
4:32
um
4:33
so so it was just kind of all these new feelings
4:36
you know about having somebody to validate you
4:41
that what you're going through is just like
4:44
what everyone else or a lot of people are going through
4:48
yeah and to validate the reason to worry that yeah
4:53
you're not just being silly
4:54
there really is a concern
4:56
yeah and
4:56
and to validate um
5:00
the the feelings of your
5:02
of your family and friends
5:04
the distance the way they're reacting to you
5:08
that that's also something that we know
5:10
that was kind of a bond over
5:11
is like what do you do
5:13
when your friends stop being your friends
5:14
and what do you do when you have marital problems
5:16
and what you know
5:17
and there were there's more people that have that than
5:23
a lot of people think a lot of people think oh
5:25
your family's gonna stick by you no matter what
5:27
and that's not necessarily the case
5:31
yeah so there was a lot of um
5:34
wow me too
5:35
wow me too
5:36
you know have you ever done this
5:38
what do you think about that and
5:39
and it was just really good to kind of
5:42
be able to go talk openly with people
5:44
and because it was a closed group
5:45
nobody from the outside could see what we were saying
5:48
in that group so that was extra helpful as well
5:51
yeah for sure
5:53
so when you first found a Facebook group
5:55
how many were there was it just one
5:58
um there was two
6:00
there was one for patients
6:02
and then there was one called friends and family
6:04
and that's where caregivers
6:06
and other people could go to get information
6:08
and there was some crossover
6:10
some patients were in the friends and family
6:12
and some caregivers were in that support group
6:15
um but there was two and um
6:19
they were they were both helpful
6:20
um there was nothing wrong with the groups
6:23
but then groups started growing out of that
6:26
uh because well
6:28
I think
6:28
when I first joined the ocular melanoma support group
6:31
I think there were only like
6:32
200 people in there which there wasn't very many
6:35
but over the years they've grown to where there's
6:38
like thousands of people in them
6:40
so it's um
6:41
it's it's been interesting to watch them grow
6:44
and to watch new groups pop up
6:46
but now we've got
6:48
we've got a couple ocular melanoma support groups
6:51
we've got the friends and family
6:52
we've got a community one
6:54
we've got the man cave that's just for men
6:58
because men don't like to talk in the groups
7:00
and most of the groups are kind of heavily women
7:04
because women share stories
7:07
and share things better than guys do
7:09
so um
7:10
we made a um
7:12
ocular melanoma support man cave many years ago
7:14
and um
7:16
I stepped out of it cause it's a men's group
7:19
and I couldn't be in it but
7:20
but we felt that there was a need for that
7:22
so A Cure In Sight created that
7:24
and now it's being managed by a really great guy uh
7:27
Jeff Howard who also does our registry
7:30
and um
7:32
it's helpful because
7:34
men and women don't even understand the same things
7:37
and then there's we have some state groups
7:39
some of them other other people have made themselves
7:43
some of them A Cure In Sight has made
7:44
but the state groups are kind of good
7:45
cause you could talk a little bit more
7:47
one on one with people that are close to you
7:49
and talk about your doctor and your center
7:51
and maybe schedule a meet up to go have coffee or hey
7:55
I'm going to the doctor
7:56
anybody else have an appointment today
7:57
and sometimes you can meet up
7:59
and I think that's kind of the uh
8:01
one of the big pluses
8:03
is that it allows people to find people close to them
8:06
so that you can have coffee
8:08
develop a bond have a friendship
8:10
um maybe meet at appointments and
8:13
and that that's been extremely helpful
8:15
so now there's lots of ocular melanoma Facebook groups
8:18
but in the beginning there were just two
8:20
that's so cool
8:21
and I think that's one of the great things about like
8:23
the races
8:24
is because even though they're not super local
8:27
they're kind of regional
8:28
so you could go to one of the races
8:30
and usually
8:31
there's at least a few patients at most of the races
8:33
so you can meet somebody
8:34
when was the first time that you met someone in person
8:38
the first time I met somebody in person was
8:41
March of 2012 wow
8:44
you remember that
8:46
oh yeah
8:46
cause I was treated in April 2,011
8:50
and so
8:50
it hadn't even been a year since I had my treatment
8:53
um but um
8:55
in March of 2,012 Ocular Melanoma Foundation
8:59
had a patient meeting in Washington DC
9:04
so um
9:05
we drove up there and attended the conference
9:09
and finally got to meet other patients in person
9:11
and meet physicians
9:13
and it was the science was a little hard
9:17
because they were talking pretty high level science
9:20
but um
9:22
but meeting the patients
9:24
and actually coming face to face with the doctors
9:27
the first time I met Doctor Sato was at that meeting
9:29
and it was it was interesting
9:31
it was a really good meeting um
9:34
but you you know you
9:35
to be able to have a conversation with a doctor
9:38
was amazing you know
9:40
and they they were just
9:41
they were talking about eye biopsies
9:43
and I was like wait
9:45
I didn't get a biopsy
9:46
they told me I couldn't have a biopsy
9:48
they said no biopsy
9:50
it will make it spread and I'm like
9:51
how can you be doing biopsies and
9:56
it was great to be educated
9:58
but then I got a little angry
9:59
cause I was told some old information
10:02
some information that was wrong
10:05
but then it just made me want to um
10:09
it just made me want to get better information more
10:13
yeah
10:13
and then to help other people find that information
10:16
I think that's probably a part of your drive
10:20
and advocacy of educating other patients
10:23
is to educate yourself and then share that
10:26
yeah cause it's
10:28
it's hard when you go to a meeting
10:30
and you hear something that somebody told you
10:32
goes against what you were told
10:34
and then
10:35
that there's a room full of physicians that say
10:37
oh no
10:37
this is good this is what we should be doing
10:40
and then you realize that
10:41
you know it's not so bad these days
10:43
but way back then it was
10:45
it was center specific what they told you
10:47
and there wasn't a lot of collaboration
10:49
among the doctors and then
10:52
you know the patients
10:53
we were able to share our personal stories uh
10:56
face to face which was a lot different than Facebook
10:59
and I still am friends with some of those people
11:01
that I met in 2,012 you know
11:03
and we connect every once in a while at a meeting
11:05
you know I connected with one at a
11:07
a meeting in Philadelphia um
11:09
and it was like oh my God Cheryl
11:11
I haven't seen you in so long
11:13
but we you know
11:14
we reminisced about our first time that we met and that
11:16
so you know
11:17
it is kind of a when you look back
11:19
at the long term friendships that you make
11:21
it's um
11:22
some of my best friends are friends that I've never
11:25
that I well
11:26
I've seen them but I don't see them often
11:29
I see them on Facebook
11:30
and I might see them occasionally at a meeting
11:32
here or there but we've all become really good friends
11:35
and we've all become like
11:36
a really good family and support group
11:39
that's amazing it is yeah
11:43
it's cool to meet people from other places normally
11:46
but especially when you have something yeah
11:50
so in common like that that's so rare
11:52
and what a bonding thing and then to get to meet people
11:55
really all over the world
11:56
I mean how far out have you met people
12:00
would you say Hawaii
12:02
well no
12:03
that's not true I've met somebody from Australia
12:06
um I met a couple people from Australia
12:08
I've met somebody from Europe
12:12
I've met somebody from um
12:13
Hawaii is probably the farthest away from me
12:16
okay yeah
12:18
that's very cool
12:20
at what point did you know that you wanted to
12:23
make an impact or a change
12:24
and just do something that no one else was doing
12:28
in 2,012 um
12:30
the summer of 2,012 I was frustrated
12:34
um I have a really
12:36
really bad personality flaw
12:39
where I don't like injustice
12:42
injustice makes me very angry
12:44
and I felt there was this huge injustice
12:47
that all these other cancers had ribbons and colors
12:50
and merchandise and
12:51
and something to hold on to
12:54
and ocular melanoma didn't
12:55
and I got extremely upset
12:57
that so many people didn't know about it
12:59
and I was like how can this be
13:01
because in the 1980s
13:03
there was a big study called the COMS study
13:05
where they actually did research into ocular melanoma
13:08
and treatment options
13:10
so I'm thinking
13:12
this is 2,012 and that was 1980
13:16
how the heck has nobody done anything with this
13:20
so I turned to the groups and I said
13:23
hey guys
13:24
nobody's done anything shouldn't we have this stuff
13:27
and they all kind of said yeah
13:29
I think we should so
13:31
I think we might have talked about this
13:33
in another episode
13:34
where we made the first awareness ribbon
13:36
and we developed the first awareness products
13:40
in December of 2012
13:43
and we had been talking about making a non profit
13:49
just for patients cause
13:51
you know there was
13:52
at that time there was Ocular Melanoma Foundation
13:54
and then MRF had an initiative called Cure OM
13:58
but they were so research focused
14:00
and they were so metastatic focused
14:02
that I felt we were missing a huge population
14:05
of the community of those that were not metastatic
14:09
but especially newly diagnosed
14:12
that needed help um
14:15
one of the things that that I've always said
14:17
is that 50% of the people might metastasize
14:20
but
14:20
100% of the people will have an issue with their eye
14:24
100% of people need resources for their eye
14:28
they need resources for how to live with this
14:32
they need something to hold on to and some hope
14:35
and when you look at it that way
14:37
it made more sense to me
14:39
to do something more in advocacy
14:42
uh just because nobody else was doing it
14:46
you know it was all research
14:48
research research and
14:51
well research is great
14:52
we all need yes
14:53
we need research
14:55
I thought that there was just something missing there
14:57
so
14:58
um we came up with the idea of A Cure In Sight
15:02
and I know you say you don't remember it
15:04
but I can remember it as clear as day um
15:08
we were sitting in um
15:11
in your dining room when you lived in Los Angeles
15:15
and I said
15:16
I think we need a non profit where something is like
15:18
there's you know
15:19
hope in the future or you know
15:21
something on the horizon and you came up and you said
15:25
well what about A Cure In Sight
15:26
I'm like oh
15:26
my god that's it
15:28
so A Cure In Sight was born in the fall of 2012
15:33
and we did we were just trying to kind of get it going
15:36
and try to figure out what to do
15:37
but so we did
15:38
we signed our incorporation papers in April of 2013
15:44
but it was actually born in 2012
15:46
that's where the idea happened and
15:49
and the the idea also came about
15:51
because of a patient that needed assistance
15:55
and I watched the people in these Facebook groups
15:58
rally behind her and help her out financially
16:01
and it's like that's what we need
16:03
so we started out with the
16:05
our core mission was going to help patients
16:07
who are financially in need
16:09
for rent food mortgage
16:12
health insurance at that time
16:14
there was no Obama Care Affordable Care Act
16:17
so there were a lot of people without insurance
16:20
and it was hard to get insurance
16:22
especially if you had a pre existing condition
16:24
so we were helping people out as best we could with um
16:27
with finding ways to afford their care
16:32
so we did talk a lot to patients about
16:36
you know when you're at the hospital
16:39
go see financial the financial aid department
16:41
and ask them for a compassionate allowance
16:43
you know and
16:44
and and work
16:45
try to work with them to make payment plans
16:46
so that's kind of how it all started
16:49
but
16:51
because I have this personality flaw about injustice
16:55
I'm like I just can't sit here and do nothing
16:58
so that's that's how it all
17:00
that's how we got into advocacy
17:02
because I just watch patients
17:04
needing something to hold on to
17:06
some kind of hope
17:07
and if it's just a little stupid ribbon
17:09
then let it be a ribbon or a little silicone bracelet
17:13
you know but something to say
17:15
I have a community behind me and and I'm gonna be okay
17:19
I love that and you're right
17:21
I do not remember that
17:24
but I believe you
17:26
well at the time
17:27
you had three little kids
17:28
and you were highly stressed
17:29
which is why I was at your house
17:30
trying to help you with the stress
17:31
you know and so
17:33
and and one was a baby
17:34
so I probably had like
17:35
some mommy brain
17:38
but yeah
17:38
he was a little bit yeah
17:40
so but I'll take the credit
17:41
that's okay yeah
17:43
it was it's it's all you
17:50
what did you know about non profits
17:53
nothing
17:55
knew nothing no
17:57
I the community college in my town had a course um
18:01
on starting a non profit so
18:03
I took a couple of courses from the community college
18:05
on how to start a non profit
18:07
and then that's another reason why it took me
18:09
from this fall of 2012 to 2,013
18:13
is I had to learn how to do this
18:14
I had to get my ducks in a row
18:15
and know what I was doing um
18:18
somewhat so I enrolled in those courses
18:20
I got certificates of completion and um
18:25
that I they kind of knew the steps to take to
18:27
to get it all together
18:29
at that time
18:29
it took a long time for the IRS to approve a non profit
18:33
and they were very stringent on the applications
18:35
so it got kicked back a couple of times
18:37
cause I didn't do it right
18:38
cause I did it the cause I didn't have any experience
18:42
but we finally got it through
18:44
and I'm very impressed that you took the time
18:48
and the money to sign up for college courses
18:51
to learn how to do this because so many people
18:53
that feel like they're gonna start a business
18:55
or start a non profit or whatever
18:56
they kind of just I'll Google how to do it
18:58
and then I'll just do it
18:59
and they don't actually know what they're doing
19:01
or take the steps so
19:02
it's actually very impressive to me that you were like
19:04
yeah I'll just take some college courses
19:05
this will be fine
19:07
well that's a big deal
19:09
yeah yeah
19:10
um
19:11
but at the time I had the time cause I wasn't working
19:15
and I needed something to keep my mind occupied
19:19
and I needed some direction
19:22
cause I I can't
19:24
I'm not a jump in the middle and
19:25
let's just do it person I have to have
19:28
I have to kind of know what I'm doing
19:30
cause otherwise I feel um
19:34
out of sorts I guess
19:35
you know I
19:36
I can't I
19:36
I couldn't ever just jump in
19:37
not knowing what the heck I was doing
19:39
so I did
19:41
I was grateful and
19:42
there are a lot of community colleges
19:44
that have classes on all kinds of things
19:45
and they're not horribly expensive either
19:48
so you can learn all kinds of things
19:51
well
19:51
as someone who does just jump in and make it up as I go
19:54
I am very impressed with you
19:56
oh thank you
19:58
cause I usually don't know what I'm doing
20:00
I just do it so um
20:01
that's I think
20:02
very wonderful
20:04
how complicated was it to start the non profit
20:08
because I know that there's a lot of rules and stuff
20:11
was it like how overwhelming was it
20:15
um the filling out the 990 was overwhelming
20:18
um they've simplified it a lot right now
20:20
but back in the day it was very
20:23
very overwhelming and um
20:27
I'm gonna say it was it was intimidating
20:29
a little scary um
20:32
but I just kept kind of forging ahead
20:34
they'd send me a letter and say
20:36
oh you need to fix this
20:37
and I'd fix it and send it back
20:39
they sent me a letter okay
20:41
now you gotta fix this it's like
20:42
why don't you just have tell me everything at one time
20:44
I have to fix um
20:46
so so it was
20:47
it was kind of a long process
20:48
so it took um
20:50
it took us a year to get our non profit
20:53
5:01 c 3 back then and that was a normal
20:57
that was normal back then
20:58
now you you apply
20:59
you get it right away so it's a lot easier now
21:03
wow
21:04
yeah I know
21:05
everything's easier now
21:07
well that's good though and
21:08
and you gotta remember we're going back to 2,012 13
21:13
so Google we had Google
21:15
but it wasn't as robust as it is now
21:18
and there wasn't a lot of um
21:22
we didn't have any kind of AI
21:24
so it was harder to find so it was a lot of research
21:27
you know how do I do this
21:29
what's the best way to do this
21:30
so
21:31
um every organization is different
21:33
so every 9 90 is different or no
21:35
I'm sorry not 9 90
21:36
every um
21:37
5 o 1 c three application is different
21:40
how long did it take you
21:41
to feel like you understood all the rules
21:44
and you were kind of
21:47
confident in running the non profit
21:51
ha ha ha ha
21:51
ha ha ha never
21:54
ha ha ha well
21:56
so I okay
21:58
there's always things that come up that you're
22:00
not prepared for and I I
22:04
there's a thing called imposter syndrome
22:06
which is something that a lot of people
22:08
who are in non profits have
22:10
where everybody thinks you're doing a great job
22:12
but you constantly are second guessing yourself
22:15
so I have that a lot
22:17
and there's things that pop up that I'm like oh
22:19
I didn't know that even today
22:20
there's still stuff that that I did not know
22:23
I wish I had somebody to help me back then
22:26
that would have said this is what you don't know
22:29
but there wasn't anybody
22:30
I try to help people now with the
22:32
this is what you need you should
22:33
you need to do this you need to do that
22:36
but I I just had to kind of learn as I went
22:38
I did join some non profit groups on Facebook
22:40
which was great that's kind of where I got my mentors
22:43
um people would tell you
22:45
this is how you set up your accounting
22:46
this is how you do fundraising this
22:49
you know these are all the pieces of the pie
22:52
um the good thing is
22:53
with the IRS is
22:54
from the moment that you submit your application
22:58
you can fundraise
23:01
even though you don't have an official 501 C3
23:03
you can so
23:04
even though it took us a while
23:05
to get the official 501 C3
23:07
we were still able to operate
23:09
we didn't have to just sit and wait
23:11
so that was that was really helpful
23:13
um but I think
23:16
I think the first three years were the hardest
23:18
because I was getting a lot of opposition
23:21
people didn't understand what I was trying to do
23:24
there was just a lot of
23:26
weird things happening in the community
23:29
so the first few years were kind of hard
23:32
and then um
23:33
I teamed up with Ocular Melanoma Foundation for a while
23:36
and we kind of became
23:37
what we called sister organizations for a while
23:39
and that was helpful
23:40
because the two of us could kind of
23:42
collaborate on things so that was very helpful
23:44
uh but I'm just going to say that even as today
23:47
things will pop up that I
23:49
I'm not sure when
23:50
I have to go ask somebody or research it
23:53
just to make sure that we're doing it correctly
23:55
because we don't wanna we don't wanna not do it right
23:59
do you feel like part of the opposition was because you
24:02
were a patient
24:03
you were discounted because you were just a patient
24:06
and not a business person or a CEO or a
24:09
you know a professional
24:11
yeah I wasn't a doctor
24:13
I wasn't a a graduate
24:15
I didn't have a master's degree
24:17
I was just a person and so I did get discounted a lot
24:21
and um
24:23
back then there was a big push for metastatic
24:26
and no disrespect to either of the other organizations
24:29
at the time but
24:29
they were both being operated by family members
24:35
of someone who had passed from ocular melanoma
24:38
there's a whole different outlook
24:40
when you're a family member
24:42
and when you're a patient
24:44
when you're a patient going through it
24:46
it's different you feel different
24:48
you act different you you
24:50
you absorb information differently
24:53
and I think sometimes that the
24:54
the people that are not patients don't understand that
24:58
and
24:58
I think that's why A Cure In Sight's been so successful
25:01
it's cause we're in the patient community every day
25:03
so we can ask patients what do you think
25:06
what do you want what do you need
25:07
and then we make our programs accordingly um and
25:11
and I think that's been real helpful uh
25:13
also going in it from the advocacy side
25:16
I think people that are not patients
25:18
don't understand how important advocacy is
25:21
cause it's it's
25:22
it's a big deal you know
25:24
teaching patients how to advocate for themselves
25:26
and giving them you know um
25:27
advocacy information and just giving them a place
25:31
to belong is a huge thing for patients
25:34
yeah definitely
25:35
and currently and the entire time
25:38
your board has always been all patients
25:40
correct
25:42
except from the very beginning
25:43
when we started um
25:45
there was my best friend
25:46
and you were on the board when we started
25:48
and then we transitioned to patients
25:50
so then yes
25:51
then we've been patients I do remember that
25:53
and that was just getting you started
25:56
yeah I don't know why you were helpful
25:58
well you were helpful because
25:59
you know I mean
26:00
remember we came up with the um
26:02
we we did that walk in um
26:04
with um
26:05
MRF at Universal Studios
26:07
and we had we all had yellow pirate shirts on
26:10
and we had the biggest team
26:11
and we had great fun um
26:13
but you know
26:13
you and my friend Laura you guys helped with that
26:16
and it was it was
26:18
it was great because it was you
26:20
I I needed that support to go forward
26:24
good and then you switched to all patients on the board
26:27
so currently and since then
26:29
what does a board mean
26:31
if someone's listening and they're like
26:32
people always say the board
26:33
the board I don't know what that is
26:34
can you give us like
26:35
a little explanation of what is the board
26:36
yeah OK
26:38
so the board is our governing body for A Cure In Sight
26:43
so we have five board members currently
26:45
we just got brought on Chris as our fifth board member
26:48
and the
26:51
what they do is
26:52
they make sure that everything is done correctly
26:55
into the letter of the law
26:57
they also make sure that all money spent
27:00
is spent accordingly um
27:02
I only have about 1500 dollars
27:04
I think it is that I can spend without board approval
27:08
so I can order you know
27:09
I can order stuff um
27:13
copy paper pens ink
27:14
you know I can do that kind of thing
27:16
um I can make a plane reservation
27:18
I can do that
27:19
but when it comes to making a big purchase decision
27:21
the board has to approve it
27:23
um
27:23
so when we set our budget in the beginning of the year
27:26
the board approves the budget and says yes
27:28
this is what we're doing uh
27:30
you have a rubber stamp
27:31
and you can go forward within this budget
27:34
if I need to go outside that budget
27:36
then the board has to approve it
27:38
um any new programs any
27:40
anything new has to be board approved
27:43
and they also um
27:46
develop policy and procedures
27:48
so that we're operating correctly uh
27:51
that we're doing everything the way we're supposed to
27:55
um they review our financials to make sure that we're
27:59
our money is good that we're doing a good job
28:02
that we're not well um
28:04
it's called being a good steward of the donations
28:07
that we're not wasting money in silly places
28:09
and that we're using it for the best way that
28:12
that we feel it need it could be used
28:15
that's great so now you've got your board
28:20
you've got your organization
28:22
you've got a couple of awareness products
28:25
in the beginning it was the ribbon and the bracelet
28:27
and then where did you go from there what was next
28:32
well we kind of stumbled along
28:37
and helped them with their patient meetings
28:39
and just gave them a patient perspective
28:42
um we were
28:44
we started giving financial help to patients
28:48
we were just really small back then
28:50
we didn't have a lot of money to work with
28:51
I remember when we first started
28:52
having $5,000 in the bank was a lot of money
28:55
you know it was like
28:56
oh look at us
28:57
we got $5,000 you know
28:59
and so um
29:00
because we didn't start with any financial backing
29:03
we didn't have anybody give us seed money
29:06
and at that time there wasn't pharma
29:09
there wasn't such a thing as pharma giving a um
29:12
grants
29:12
because there wasn't a lot of pharma even working in
29:16
with ocular melanoma and the big guys were like
29:18
no we no
29:19
we're not gonna support you
29:21
so we just kept getting donations and
29:24
you know trying to
29:25
to go forward and um developed
29:28
a couple of 5 KS
29:30
uh we did our first one was in Dallas with a then board
29:32
member that we had she lived in Dallas
29:35
and she wanted to do a 5 KS
29:36
we did a couple there and we raised some money
29:38
then we did a big one in North Carolina with um
29:41
Duke and Doctor Mruthyunjaya
29:43
and we raised some more money
29:45
and we just kept kind of plotting along
29:47
raising money and expanding as we went
29:49
so in the early days we had the
29:51
we had a couple of 5 KS
29:52
and then we also had the swing for sight
29:54
we worked on um
29:55
in the beginning
29:56
we did that with ocular melanoma foundation
29:58
we branched out then and just did it all by ourselves
30:01
so that's been a huge fundraiser
30:03
and we're on our 13th year there
30:05
so we've we just started doing those types of things
30:07
kind of more grassroots I guess you'd say
30:10
and then the patient population kind of caught on
30:13
and kind of started to support us more
30:15
and then luckily
30:18
pharma has grown
30:19
and we have a lot of great companies that
30:22
that are working in ocular melanoma
30:24
that support a lot of our programs
30:25
so then
30:26
um around 20
30:29
I think it was 2018
30:31
we had our first patient meeting all by ourselves
30:34
um Ocular Melanoma Foundation says
30:36
we don't want to do these anymore
30:37
so we took them over we had our first one in Disney
30:40
and that was amazing you were there for that one
30:43
um that was yeah
30:44
that was a fun one but it was a big learning curve
30:47
big big
30:48
big learning curve um
30:50
and then from there we went to Redondo Beach
30:52
and so we were kind of feeling good
30:54
we were getting some sponsorships for our meetings
30:56
and we were we were feeling good
30:58
and then Covid hit and but then
31:01
the good thing about covid is
31:02
we had nothing else to do
31:03
we couldn't go anywhere so we were able to do
31:06
to develop more programs so we did the
31:08
we developed the podcast
31:10
we got the registry up and running
31:12
um that was that
31:13
we've been working on that in the um
31:15
kind of in the background
31:16
with Doctor Damato since 2,015
31:19
so we were doing a lot of things
31:20
kind of behind the scenes
31:21
but funding was tough
31:23
and trying to get things off the ground
31:25
it was hard but as computers get better it
31:29
it made it a lot easier so we were able to
31:31
2020 was kind of a big turning point for us
31:35
and then unfortunately
31:36
we had a board member that passed away from Covid
31:38
and she left us a fairly good sized um
31:41
chunk of money as a donation in her will
31:44
so um
31:46
around 2022 I think it is we
31:48
we received that and then we were really able to to
31:51
to utilize that money for more programs and to get
31:56
um to get more things going
31:58
you know we were able to hire Danet to do the podcast
32:00
instead of me uh
32:02
you know
32:03
we were just able to do a lot of things cause we had
32:05
we had some money we could work with
32:07
absolutely what a blessing
32:09
yeah it was
32:10
and her name was Laurie Walters
32:12
and um she
32:16
she wanted us to do something with technology
32:18
she said I'm a big technology fan
32:21
so if I ever pass and you get this money
32:23
this is what I want you to use it on
32:25
so we looked at technology
32:27
you know we were able to to
32:29
to do some things to um
32:32
to help us get our website redone
32:35
we were able to get the podcast up better
32:39
you know there was a lot of things we were able to do
32:40
and follow her wishes that we
32:43
and I think she'd be really proud
32:46
definitely
32:47
okay so let's go forward even more okay
32:51
what kind of struggles at this point were you having
32:56
we had so many struggles
32:59
what was your biggest
33:01
the biggest was people not understanding
33:03
and the gossip in the community
33:05
that was huge we're still trying to overcome
33:08
the gossip in the community
33:10
because I don't I don't understand
33:12
why people don't think for themselves
33:14
and why if somebody tells them something
33:16
they believe the negative
33:18
instead of going to somebody and say hey
33:20
I heard this is it true
33:22
can you tell me more about this
33:24
um
33:24
and so we kind of had some divisions in the community
33:28
a lot of it was spurred on by another organization
33:32
and their followers and there's still ramifications
33:37
today because of that way back in 2,013
33:41
14 15 was when it was really bad
33:44
um and
33:45
and I think it's this um
33:49
I I understand when you find a a
33:51
a group that you are passionate about
33:54
but I don't understand the
33:56
throwing another group under the bus
33:58
we should all be working together
33:59
you know our
34:00
we've always said support us
34:02
support them support anybody
34:04
you know we have people in our community
34:05
that support American Red Cross
34:07
they don't do anything necessarily for ocular melanoma
34:11
but if that's where their passion is
34:13
do it you know
34:15
if you want to do The American Cancer Society
34:17
then do it but support everybody
34:19
you know because there's a lot of good happening
34:22
there's a lot of good research happening
34:24
there's a lot of good education happening
34:25
there's a lot of good advocacy happening
34:27
and that has just been a struggle of misunderstanding
34:30
the rumors the gossip
34:33
and and not being able to address it
34:35
not being able to say
34:37
no I didn't do that
34:39
you know not being able to go to that person and
34:42
you know we still have it today
34:44
we still have a couple of
34:45
of people that are still out there
34:47
throwing us under the bus any chance they get
34:50
and I don't know why
34:52
I would just ask everybody to if you hear something don't
34:55
don't believe everything on face value
34:56
find out for yourself do some research
34:58
think for yourself
34:59
because it's caused a lot of problems in the community
35:01
and unfortunately we've kind of been the target
35:04
but I I keep hearing
35:07
I keep hearing this and it's hard
35:09
people say when you're doing good things
35:11
people you are
35:12
you become a target
35:14
and I know that we're doing good things
35:16
so we are a target um
35:17
but I just wish that they would target somebody else
35:20
for a while cause it's exhausting
35:22
honestly it's so hard
35:24
it's so hard to just put your head down
35:25
and just keep working
35:26
and listen to the gossip in the background and
35:28
and you get the hateful messages and
35:30
I mean I get hateful um
35:33
direct messages in Facebook
35:35
hateful emails hateful
35:37
you're an awful person you shouldn't be doing this
35:39
how dare you I was like
35:41
what am I doing this so terrible
35:43
so that's been the hardest part honestly and
35:45
and I I don't like to talk about it a lot
35:48
but um
35:50
the attacks and the unfounded attacks
35:52
you know one of the things we were accused of
35:55
was misappropriating funds
35:56
and I can tell you right now
35:58
that there has been nobody
35:59
that has ever come into my office
36:01
and said let me review your books
36:03
but as a 501 C3
36:06
we have to allow everybody to come in
36:08
and look at our books
36:09
we publish a 990 every year
36:12
now that we're bringing in more money
36:13
we have to have an audit
36:14
we're in the process of an audit right now
36:17
people that say these things
36:19
they don't have any basis for it and
36:22
and it's hurtful and it hurts the community
36:24
and there's it just needs to stop
36:25
in my opinion
36:26
but that has been the hardest road we've had to
36:29
to go
36:29
is to overcome the misinformation that's out there
36:32
and the and the hurtful gossip
36:36
and just so everybody knows
36:38
touch on that audit for a minute
36:39
you're not getting audited
36:40
because there was something suspect you
36:42
that's just a normal procedure
36:44
oh yes
36:45
I'm sorry yes
36:45
you have to be audited when you hit a certain
36:47
certain thresholds of income to get licensed
36:51
with some states
36:53
so we we're bringing in around 600,000 a year
36:56
so that put us to that level
36:57
where we have to have a financial statement audit
37:00
so we have to we have to provide our board minutes
37:03
we have to provide our document
37:05
our pronounce our um
37:09
our balance sheet our financial statement
37:12
our you know
37:12
and we have to provide them with all of those
37:15
and they look at last year compared to this year
37:17
and if there's any weird variance
37:19
we have to explain why and then if they're satisfied
37:22
then they say okay
37:23
you're good and we get a stamp
37:24
if they're not satisfied then we can get a bad Mark
37:27
and we have to go back and fix it
37:29
but audits are normal things in non profits
37:32
when you hit certain levels
37:34
in order to get funding in different states
37:37
right and
37:38
I just wanted to make sure everybody understood that
37:40
I didn't
37:40
I didn't want anyone to hear what you said and then go
37:43
oh my god
37:43
they're getting audited they're doing terrible things
37:45
and go oh yeah yeah yeah
37:47
misinformation is a big um
37:51
thing you wanna avoid in this
37:52
so yes
37:53
um let's talk about Charity Navigator because okay
37:57
like you said all of
37:59
all of the information is public
38:01
anybody can access exactly what money is brought in
38:04
and what it's spent on so there is no misconception
38:06
so tell us about Charity Navigator
38:09
so Charity Navigator rates non profits by their um
38:12
990 and their work that they're doing
38:15
and so we have to fill out a lot of forms
38:17
and go through a lot of stuff on the computer
38:19
with Charity Navigator and give them the information
38:21
they pull our our 990 directly from the IRS
38:24
so there's no we
38:26
we can't cook the books basically
38:28
you know we can't give them something that's not true
38:30
cause they get it right from what we
38:32
what we um file with the IRS
38:34
so um they look at all of this stuff
38:37
and then they give us a rating
38:39
based on what we've given them
38:41
and unfortunately our I didn't catch it
38:44
and our account at the last two years
38:47
left our website off of our 990
38:49
we got a ding so we didn't get 100%
38:52
but we're still um 4 stars
38:54
so we're still top platinum level um
38:57
and so they've reviewed us and they say yes
38:59
you're good your programs are solid
39:01
your your money is solid
39:02
your 990s are solid
39:03
and so they've given us the four star platinum rating
39:06
and is four the highest four is the highest
39:09
five is the highest it can go
39:11
okay so everybody listening
39:14
everything is above board
39:16
everything is accounted for
39:17
y'all can chill well and you know
39:20
if you're listening to this we love you
39:23
so here's the thing is it because I'm the face
39:26
cause I'm the one that's the most active
39:28
because I wear two hats I am the president
39:30
but I'm also the acting director
39:33
so because I wear these two hats
39:35
people think oh
39:36
well I'm just doing all this
39:38
but I'm not I mean
39:39
the board keeps has to keep me in check
39:43
um and just so people know
39:45
just because I am the president of the board
39:47
I'm also the acting director
39:49
so when I go to the board with something
39:51
I don't vote
39:52
okay I just don't vote because I don't
39:55
I feel like okay
39:56
I have to take the president hat off
39:57
and I have to put on the executive director hat
40:00
so I I
40:01
now I I'm biased
40:03
and I don't wanna make
40:04
I don't wanna influence their vote
40:07
so I give them the information
40:09
they vote on it and I stay out of it um
40:12
because I think I feel that's the right thing to do
40:15
and the board is fine with that
40:17
um but they have to put their stamp of approval
40:20
so when you see everything with A Cure In Sight
40:22
it's not oh melody
40:23
melody melody
40:25
you know melody makes very small decisions here
40:28
she buys the pens
40:33
but we got a really good pen
40:35
um but
40:36
but
40:37
I think that's the thing that people don't understand
40:39
they think Melody's just out here
40:41
making these decisions and spending this money
40:42
but I'm not I have to go ask them
40:44
I mean I had to call a board member today and say hey
40:47
you know we just signed up for this wholesale account
40:50
and you know
40:51
the board approved that we could buy some jewelry
40:53
to have on our store
40:55
so is it okay if I buy these two items
40:57
they were within my limit
40:58
I didn't have to but I wanted to clear it with somebody
41:01
that these two items were good items to buy
41:04
because I try to not make big decisions without their
41:07
somebody on the board knowing what I'm doing
41:10
um we are a close knit group of people
41:13
we talk a lot sometimes every day
41:16
um they know exactly what I'm doing at all times really
41:20
and and so um
41:22
I think that there's a big misconception
41:24
that melodies just run a muck
41:26
cause melody doesn't run a muck
41:28
haha
41:30
I'll tell you the third the
41:31
now we've got Chris
41:32
he hasn't had a chance to keep me in line yet
41:34
but um Lauren and Suzanne and Marlene
41:36
don't have a problem telling me no
41:40
they do quite often yeah yeah
41:42
and that's okay you know um
41:44
I'll come up with this really great idea
41:46
I got this great idea and they're like no dang
41:49
try again
41:51
so you do two jobs you said mm hmm
41:54
you work how many hours a week you work
41:57
oh gosh
41:57
I don't even know countless
42:00
yeah a lot
42:01
a lot a lot of hours
42:03
and a lot of travel and when we travel
42:06
just so everyone knows we
42:08
there's no on the clock off the clock
42:10
we get up we leave the hotel
42:11
we work all day we come home
42:12
we go to bed it's all day
42:15
um and we don't count our hours
42:16
so with that said you work a ton
42:19
you run this organization
42:21
you do a lot for patients
42:23
what is your salary
42:25
0 0 dollars you make zero dollars
42:28
and why did you make that decision
42:31
I made that decision yes
42:33
you chose that why I did
42:36
well
42:38
we had talked before about my divorce
42:40
that I was in a good spot with my divorce
42:42
I'm in a good spot um
42:44
I've got a steady income stream through Airbnb
42:47
my house
42:48
I'm living comfortably but I'm not living excessively
42:51
you know I have enough money to pay my bills
42:54
and I would rather hire people to do jobs
42:57
to grow A Cure In Sight than to get a salary
43:00
um it's
43:01
I think it's much better for me to pay
43:04
you know we've got our um
43:05
accounting person we've got Lucy
43:07
our admin we've got Danet
43:09
who does podcast and webinars
43:10
we've got you who does podcast and
43:13
and newsletters and all the
43:14
all the hats you wear um
43:16
it's better to pay you all then for me to take a salary
43:21
because I don't have to have the money
43:23
and I'm not trying to be wealthy
43:25
I'm not trying to live
43:28
you know extravagantly
43:30
I just I'm living frugally
43:32
so it to me
43:33
it makes sense to not for me to not draw a salary
43:37
I never have drawn a salary
43:39
I've always been a labor of love
43:41
and I've always done what I needed to do
43:43
to grow the organization for the community
43:45
not for my own personal um
43:47
growth or my own personal gain
43:50
so you're 100% a volunteer 100% a volunteer
43:55
the only thing that A Cure In Sight pays me is they
43:57
they cover my expenses
43:58
and just so everyone knows
44:00
board members are also volunteers
44:02
correct um
44:03
a non profit board member cannot get paid
44:07
okay and they all volunteer their time
44:10
and just like me they get their expenses covered
44:14
perfect and also
44:16
you know
44:16
you say that you don't want to collect a salary
44:18
because
44:18
you'd rather pay us to help grow the organization
44:21
but also I think a big
44:23
important piece that you didn't say
44:24
is to keep funding
44:26
all the programs that benefit the patients
44:28
because you could take a salary and have less programs
44:33
if I took a salary it would be
44:35
or if we paid somebody to do what I do um
44:37
we wouldn't be able to give financial assistance
44:40
we wouldn't be able to produce
44:41
the education programs that we have
44:43
because we have to make choices
44:45
you know it would be
44:47
it would be me or you and Danet
44:49
or somebody to replace me
44:51
or you and Danet
44:52
and you and Danet are too important to give up
44:56
just to pay a person to do what I can do
44:59
well that's very heroic
45:00
and I know that you would not admit that
45:02
but I'm gonna tell you that it is
45:04
so everyone who's sending her the hate mail
45:08
just
45:09
not that any of those people would listen to this
45:11
anyway but I'm just gonna say
45:12
if you're if you're listening to this
45:14
and somebody tells you something
45:16
you can repeat everything we just said
45:18
that she's 100% a volunteer for you
45:21
so those are my biggest challenges
45:23
the rest of it's easy
45:26
honestly the rest of it's easy
45:27
you know our
45:28
our our pharma partners are awesome
45:31
I have great relationships with them
45:33
I've made great friendships with them
45:34
our doctors are awesome our patients
45:36
for the most part are awesome
45:38
for most most of the day to day stuff is easy
45:42
but that is the hardest thing because it
45:44
it hurts my soul
45:46
uh huh yeah
45:47
when you're doing everything you can do
45:49
you're not even collecting a paycheck
45:51
every program is for the benefit of the community
45:53
and then to have people attack
45:55
and I've personally witnessed it
45:57
so I can say that it is when it happens
46:00
it is unfounded and it's so shocking that you're like
46:03
why would they think that
46:04
number one and why would they say it
46:05
number two and why would anybody believe them
46:08
number three and it is
46:10
it's it's hurtful
46:11
but it's also I think a lot
46:13
the shock of why why
46:14
and whenever you are in the public eye
46:17
whether it's small scale like this or
46:20
I mean
46:21
anything people are gonna go after you
46:23
whether you're doing good
46:24
or you're just in a leadership position
46:26
so those are definitely things that I've experienced
46:29
too so
46:31
you know it's sad
46:33
it happens
46:35
yeah Danet gets hate mail
46:37
yeah people leave her
46:38
she's just out there trying to tell her story and do
46:41
do the best for the community
46:43
it's just but
46:44
you know
46:45
when people are going through a hard time
46:49
which obviously cancer is a very hard time
46:53
a lot of times when you're in a hard place
46:56
it's easy to turn to the negative
46:58
it's easy to lash out and say
46:59
this is your fault you're not doing it right
47:01
and it's easy to get sucked into the ugly
47:03
so um
47:05
you know I think we can
47:06
have some compassion towards those people
47:08
and understand that it's not about us
47:11
it's they're in a
47:12
they're in a hard place
47:13
but we also need to block it and move on
47:16
and not keep in don't keep engaging with it
47:20
somebody didn't like me because somebody in 2,012
47:24
2,012 said to them that we were collecting donations
47:28
without being a non profit
47:31
OK
47:32
I have explained to that person in 2025
47:37
OK 2,012 2025
47:40
that when you are going through the application process
47:44
you are allowed to receive donations
47:47
and then when you're approved
47:48
everything's fine if you're not approved
47:50
you have to either give the money back
47:51
or you have to make arrangements with your donors
47:53
so I I had to explain that to her now
47:55
from 2012 to 2025 she hated me
48:00
because somebody told her something that was untrue
48:02
and she never one time came and said
48:03
hey melody
48:04
explain how you're collecting donations here
48:06
I'd tell her
48:08
and if she said can I see your books
48:09
I would have to show her
48:12
yeah you know
48:13
our 990s public
48:14
a public document at any time
48:16
anybody can go look at our 990
48:18
we have an accountant who does our 990s
48:21
he is a CPA
48:22
he will not lose his license to do anything shady
48:25
he does not no
48:27
and if she wanted money she could just collect a salary
48:30
so let's also remember that
48:31
she could collect a salary if she wanted to
48:34
she chooses not to so if she's gonna cook a book
48:37
she would just pay herself instead and not go to prison
48:42
let's be real guys
48:43
let's be real
48:45
I know embezzlement does not look good on me
48:47
no I don't want to be
48:48
I don't want to go to jail for embezzlement
48:50
no
48:51
right when you could absolutely pay yourself
48:54
you could you
48:54
if you and I'm not saying you should
48:56
but I'm saying you could cut a program and pay yourself
48:59
why would you not do that and risk prison
49:02
it makes no sense so you guys
49:04
when you hear rumors just think about it with like
49:07
a grain of of of
49:08
you know salt and um
49:11
maybe tell the person hey
49:12
that doesn't sound right instead of ooh gossip
49:15
let me jump in and again
49:16
nobody watching this is gonna do that
49:17
we know that but
49:22
the whole point of A Cure In Sight
49:23
is to go out and help all of these people
49:25
so I mean
49:27
I don't think you'll learn
49:28
I think you're gonna keep helping everybody you talk to
49:31
because that's the whole point
49:32
and yeah
49:33
it just really hurts when those people turn on you
49:36
and accuse you of the worst
49:37
when it's not true
49:37
when all you did was try to help them
49:39
and I think that's why it hurts so bad
49:41
versus if it was just a random neighbor
49:43
or just you know
49:44
somebody you didn't know very well
49:45
it's somebody that you're
49:47
pouring your heart and soul into
49:48
trying to help and
49:50
while it's unfortunate
49:51
that you do run into a few of those people
49:55
the community on the whole
49:57
would you say has been supportive of you guys
50:00
yes I think the community
50:02
as a whole has been very supportive
50:04
um we appreciate them
50:05
we appreciate their their dedication to us
50:08
we appreciate their support
50:09
we appreciate them sharing our content uh
50:11
we appreciate them giving our content to other patients
50:14
so that they can find us easier
50:16
um that's always huge
50:18
so for the the majority of the population is great um
50:22
you know we so
50:23
and like we were just saying
50:24
don't focus on the negative
50:25
we try really hard
50:26
not to focus on those negative people
50:28
but
50:28
because you asked me what was the most difficult part I
50:31
I mean that's the most difficult part
50:33
for the most part most of the community is wonderful
50:36
and I have made wonderful friends uh
50:39
in the community I mean
50:40
dear friends that people that we're very
50:42
I'm very close to and um
50:45
we've become more than friends even uh
50:49
and so the
50:50
the community is very supportive and very helpful
50:54
and
50:55
most of the people don't understand why this little
50:57
negative group does what they do
51:00
but it just keeps moving one leaves
51:02
another one comes
51:02
it's just life and the way it's gonna be
51:04
but we appreciate everybody that hangs in there with us
51:07
and enjoys our content and
51:09
and likes what we do and you know
51:10
supports us
51:12
we're grateful to be here
51:13
to be able to do it you know
51:14
we're blessed that we're still here
51:16
to be able to do this cause we've lost a lot of friends
51:19
so
51:20
and that's why you keep doing it right
51:24
yeah we've lost three board members over the years
51:27
three of our board members have passed on um
51:30
so it's a um
51:32
it's a you know
51:34
we understand both sides you know
51:36
we feel the loss just like the community does
51:38
cause we lose you know
51:38
we lose our dear friends too
51:40
well everyone
51:41
thank you for joining us today
51:43
as we talked about the beginning
51:45
the creation of A Cure In Sight
51:47
the biggest struggle
51:48
dealing with it in the beginning and currently
51:50
and the biggest blessing is you guys just tuning in
51:53
sharing our content and following along with us
51:56
the whole point of this
51:57
is to get information out to the community
51:59
and advocate and we can't do that without you
52:01
so we really do appreciate it
52:03
and that's a perfect segue to wrap this up
52:05
because how do I always end episodes
52:07
by thanking our audience for watching
52:09
because we can't do any of this without you
52:11
we can't have a podcast without viewers
52:12
we can't post on social media
52:14
without people to watch it
52:16
you are the point your why we're here
52:18
your why we're doing this
52:19
so thank you for watching
52:20
please leave us a like and a comment
52:22
let us know what do you think about this
52:24
are you did you learn something about the process
52:27
of creating a non profit that you were surprised by
52:29
are you surprised
52:30
her biggest struggle is negative criticism
52:32
did you think it was all sunshine and roses
52:34
let us know leave us a comment and um
52:37
you know just check out A Cure In Sight's website
52:39
we have so many resources that are there for you
52:43
so please check them out come see us at a 5K
52:47
go to swing for sight in Napa in the spring
52:50
go to the patient meeting this year
52:51
it's going to be in Dallas in October
52:54
we have so many resources
52:55
that you can go meet other patients
52:57
there's a zoom group every Tuesday that you can
53:00
it's Tuesday evenings you can meet other Omies and talk
53:04
and just so many resources
53:06
podcast episodes it's just
53:08
it's all there for you so please take advantage of it
53:11
and you know
53:11
if you can make a donation
53:13
that would be lovely we are doing a campaign right now
53:15
26 and 26
53:16
we're encouraging everyone to donate $26 a month
53:20
in the year 2026
53:21
we started it in light of Rare Disease Day
53:23
and we're gonna carry it through the year 26 and 26
53:26
so if you can commit $26 a month
53:28
we would greatly appreciate it
53:29
it funds all of these programs
53:31
it does not pay melody as we said
53:33
but it does fund the programs
53:35
and if you can't do that start a Facebook fundraiser
53:38
do anything you want
53:39
I do want to say one thing that we missed
53:41
it doesn't pay you either
53:42
because you're paid by sponsorships
53:45
true I get paid
53:46
so yes
53:46
the donations do not pay your salary or Danet's salary
53:49
you guys get paid through sponsorship
53:51
so we do and that's another segue
53:54
cause the next thing I do is thank the sponsors
53:56
and this
53:57
this particular episode does not have a sponsor
54:00
but our regular podcast is sponsored
54:03
so um
54:05
we can't do anything again without the sponsorships
54:08
and the pharma companies and they sponsor the podcast
54:11
the patient meetings
54:12
so many of our things are sponsored by them
54:15
and they do it for you
54:16
they pay us to do these educational
54:19
wonderful things so that you can benefit from it
54:22
they're in it for you they are your advocate
54:24
they are supporting you so if you haven't met them
54:28
and you don't know what we're talking about
54:29
when we talk about how great these people are
54:31
come to our events they're at most of them
54:34
you'll meet them and you will love them like we do
54:37
so thank the viewers thank the sponsors
54:39
those are the two biggest things I do when I wrap up
54:41
and that's why cause you guys make this possible
54:44
and then check out the resources on the website
54:46
they're there for you
54:47
and we're gonna leave it there for this episode
54:50
and we will see you guys on our next episode
12:10
um but in the United States
28:35
we worked with ocular melanoma foundation
36:11
we're getting audited
49:19
you know one day I'll learn