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My 15 Years | Episode 10: The Story Behind Lookin' For A Cure 5K · The Eye Believe Podcast

• 0:05
  hey everyone welcome back to Melody's 15 years
• 0:07
  this is episode 10 and today
• 0:09
  we are gonna talk about the launch of the
• 0:11
  Lookin' For A Cure 5Ks
• 0:13
  welcome Melody
• 0:15
  thanks thanks
• 0:17
  alright whose idea was 5 Ks in the very beginning
• 0:23
  um it was a collaborative effort of the board
• 0:25
  at that time we had um
• 0:28
  we had a the Huntersville
• 0:31
  North Carolina group wanted to do a 5K or a walk
• 0:36
  at that time they weren't
• 0:37
  they were 5 Ks but they were more like a fun run
• 0:40
  they weren't timed in that
• 0:44
  um we had a board member
• 0:47
  Lori Caperton who lived in Dallas
• 0:49
  and her and her daughter wanted to do a real 5K
• 0:52
  and so they came up with the tagline Lookin' For A Cure
• 0:57
  and had a we had a graphics designer
• 1:00
  designed a little looking guy
• 1:03
  and we call him Ned as well
• 1:04
  so um
• 1:06
  the little looking for a cure guy is Ned
• 1:08
  and so that Dallas
• 1:10
  was our first official launch of Lookin' For A Cure 5K
• 1:14
  what year was that
• 1:17
  um 2000 and
• 1:21
  14 I think maybe
• 1:24
  yeah quite a while ago
• 1:27
  so they've been going for a while
• 1:29
  how did you start the 5Ks
• 1:33
  cause that sounds like a very overwhelming process
• 1:36
  like where did you even start to start
• 1:39
  well when you start with one
• 1:40
  it's really easy cause it's just little
• 1:43
  and it wasn't a big production
• 1:44
  cause we might have only had 30 people at the time
• 1:47
  cause it was so small and there wasn't a big community
• 1:51
  um
• 1:52
  even though there were Facebook groups
• 1:54
  and there was a community coming together
• 1:55
  there still wasn't like a big community
• 1:58
  so in Dallas there were
• 2:00
  I don't know five or six patients
• 2:02
  that came together and did it with us
• 2:05
  and Lori and her daughter did the um
• 2:08
  the planning of that uh
• 2:10
  we did it at a park
• 2:11
  and so everything was kind of controlled
• 2:14
  so it was
• 2:16
  um we had to get out flyers
• 2:18
  we had to get physicians to talk
• 2:20
  you know we had to we
• 2:22
  we had a lot of things to do uh
• 2:25
  but it was manageable with just one um
• 2:27
  Lori was able to get raffle prizes donated
• 2:30
  she got sponsors she did a really great job
• 2:32
  and so she kind of made it look really easy
• 2:37
  and she was doing a lot of the work
• 2:38
  so it would seem like oh
• 2:40
  this is a great idea so um
• 2:42
  we started off just doing Dallas and North Carolina
• 2:47
  and then um
• 2:49
  we did
• 2:50
  we brought the Lookin' For A Cure to Raleigh Durham
• 2:54
  North Carolina um
• 2:56
  with Doctor Mruthyunjaya and Duke
• 2:59
  and then it that one kind of caught on
• 3:01
  and Duke got really involved
• 3:03
  and Duke is still hugely involved in that race
• 3:05
  all these years later
• 3:07
  and so we we just
• 3:09
  they just kept growing they just kept popping up
• 3:12
  somebody would say we need one here
• 3:14
  we need one here we need one here
• 3:16
  so
• 3:19
  that's that's how it all snowballed
• 3:21
  and that's really what happened
• 3:22
  it just snowballed there was a couple successful ones
• 3:26
  and then they
• 3:28
  um got more people involved uh
• 3:32
  they got more momentum to where
• 3:34
  now most of our walks have
• 3:36
  at least 100 people that come to them
• 3:39
  and that's exciting but we want hundreds and hundreds
• 3:42
  yeah that's amazing
• 3:44
  because the point of the walk
• 3:46
  bringing community together
• 3:48
  raising awareness but also raising funds right
• 3:51
  correct correct
• 3:52
  um every walk
• 3:55
  we encourage people to be a fundraiser
• 3:56
  to ask their friends and family for funds to
• 4:00
  to help support us um
• 4:01
  I think the most we've ever raised
• 4:03
  at one walk was Scottsdale
• 4:04
  was $30,000 um
• 4:07
  Palo Alto is like right about that
• 4:09
  um and when we raise big funds like that
• 4:12
  we do split them with the
• 4:13
  with the hosting physician or researcher
• 4:16
  if there is one
• 4:18
  yeah and that
• 4:19
  we give them some money for their research team
• 4:22
  and it get you know so
• 4:23
  and it helps us out
• 4:24
  and we usually use the money for the
• 4:26
  Lookin' For A Cure runs for patient support
• 4:29
  that's fantastic walk us through
• 4:31
  patient support real quick because
• 4:32
  I think a lot of people see the education we put out
• 4:35
  and they think A Cure In Sight does education
• 4:37
  and um
• 4:38
  we don't highlight the financial aid so much
• 4:42
  because we don't we don't post who we give it to
• 4:45
  so you don't really see it behind the scenes
• 4:47
  so walk us through a little bit
• 4:49
  of what patient aid looks like
• 4:51
  so financial aid is a grant for patients
• 4:54
  they have to qualify for an income level of
• 4:58
  you know not poverty
• 4:59
  but not
• 5:01
  you know there there's
• 5:01
  there's a line there we go like
• 5:04
  I think it's 200% over poverty maybe
• 5:06
  and we look at each city because obviously
• 5:10
  you have to make more to live in New York City
• 5:12
  than maybe you would have to live in
• 5:14
  you know a small Midwestern town
• 5:17
  um the cost of living is taken into consideration
• 5:20
  so we look at the wages the cost of living in that area
• 5:24
  and then we make an award
• 5:26
  it's up to $2,000 per patient right now
• 5:30
  uh the reason it's only $2,000
• 5:33
  is cause we don't get a lot of donations for it
• 5:35
  uh a lot of our donations
• 5:37
  that are not coming from sponsors
• 5:40
  is being tagged for research or something else
• 5:45
  so you know
• 5:46
  administration costs and that
• 5:47
  so we put as much as we can towards um
• 5:52
  towards the financial aid
• 5:54
  and our our idea with it was
• 5:56
  it's to it's not to be a long term support system
• 5:59
  it's to get you over the hump
• 6:01
  so when you're newly diagnosed
• 6:03
  either with newly diagnosed metastatic
• 6:05
  or newly diagnosed with your primary eye
• 6:09
  you're not prepared you know
• 6:11
  you don't might not have vacation or sick pay
• 6:13
  you might not have money saved up to take time off work
• 6:17
  to go get treated and it's real easy to fall behind
• 6:20
  and we don't want anybody to do that
• 6:21
  so our financial aid can be used for travel
• 6:24
  of course um
• 6:26
  plane gas cards train tickets
• 6:30
  any kind of travel that they need
• 6:33
  but it can also be used for living expenses
• 6:35
  it can be used for rent or mortgage
• 6:37
  it can be used for utilities
• 6:39
  we do not cover cell phones
• 6:41
  and we don't um
• 6:43
  cover car payments but we do a um
• 6:46
  medical bills um
• 6:49
  medical or I'm sorry
• 6:50
  insurance copays
• 6:51
  uh gas cards for medical treatment only
• 6:56
  and grocery cards um
• 6:58
  for the family too so that they can have food
• 7:01
  we don't want anybody having to make a choice
• 7:03
  to pay a medical Bill or eat
• 7:04
  that's just not that doesn't sit well with us
• 7:08
  but all this
• 7:08
  program started because
• 7:12
  this is kind of the cornerstone of A Cure In Sight
• 7:14
  this is what we built our foundation on
• 7:17
  and it started with a patient in um
• 7:21
  Lake Tahoe California
• 7:22
  who needed to get to San Francisco
• 7:24
  and I've told the story before
• 7:26
  and she couldn't get there
• 7:27
  because her car wouldn't make it
• 7:29
  she didn't have enough gas money to pay somebody
• 7:31
  she couldn't get a bus ticket
• 7:33
  she was just frantic
• 7:34
  she didn't know what she was gonna do
• 7:35
  cause she had to go to the doctor
• 7:37
  for a checkup on her eye and
• 7:39
  I watched the community rally around and give her help
• 7:43
  somebody rented her a hotel room
• 7:44
  somebody gave her a gas card
• 7:46
  somebody gave her money to fix her car
• 7:47
  you know
• 7:48
  there was all of this outpouring from the community
• 7:50
  to her and I thought
• 7:52
  that's what we need we need that so in the time of need
• 7:55
  the community can come together
• 7:57
  so that's that's how this program works
• 8:01
  it's for when you are in a time of dire need
• 8:04
  it's not a support system for a long period of time
• 8:07
  it's meant to help you give you a break
• 8:10
  I don't have to think about paying my mortgage
• 8:12
  for a month now
• 8:13
  I don't have to think about how to get groceries
• 8:15
  cause they're gonna send me a grocery card
• 8:16
  and I go grocery shopping
• 8:17
  my lights are not gonna get turned off because I can
• 8:20
  they're gonna pay my electric bill
• 8:22
  so that's that's how the program works
• 8:25
  the reason that we do not post who we give it to
• 8:27
  is because we don't really feel
• 8:30
  that that's anybody else's business
• 8:32
  and most of our people that get aid
• 8:35
  don't want to tell their story
• 8:37
  because there's a stigma about it
• 8:39
  you know it's
• 8:40
  they're embarrassed sometimes
• 8:42
  they don't want people to know
• 8:44
  they certainly don't want it on social media that
• 8:46
  oh you know
• 8:47
  these people paid my my mortgage this month
• 8:50
  you know it
• 8:51
  it's it's a hard thing
• 8:53
  we don't want to exploit our our
• 8:54
  our patients just to try to get more donations
• 8:57
  so that's why it's very quiet and in the background
• 9:00
  but we give between
• 9:01
  60 and 80 thousand dollars a year in aid
• 9:05
  so
• 9:06
  that just drives home why these races are so important
• 9:09
  because they fund this financial aid
• 9:10
  that is so critical to patients
• 9:13
  and how does that enter into your story
• 9:15
  when I was diagnosed I didn't have um
• 9:19
  the means as well to and so
• 9:21
  I do know personally
• 9:23
  how important it is to get help when you need it most
• 9:27
  because it's a very scary feeling to think
• 9:32
  I can't work how am I gonna pay my bills
• 9:35
  so I wanted to make sure that
• 9:37
  everything that we did with A Cure In Sight
• 9:39
  solved the need that most patients find themselves in
• 9:42
  not every patient but most patients
• 9:44
  so I I used my own experience
• 9:47
  and we used the experience of our board members
• 9:49
  to make sure that everything that we do
• 9:51
  at A Cure In Sight
• 9:52
  is covering a need that we wish we would have had
• 9:56
  and the five K's
• 9:59
  I think it's so important
• 10:00
  and it's become kind of a
• 10:02
  a project of mine
• 10:04
  because I want the community to come together
• 10:07
  I want them to meet each other
• 10:08
  I want patients to come together
• 10:11
  I mean we just had one at Raleigh
• 10:12
  how would we have 8 or 10 patients
• 10:16
  I mean it was a lot
• 10:17
  and I want patients to come and meet each other
• 10:20
  because I hear it time after time
• 10:22
  I've never met anybody with ocular melanoma before
• 10:25
  so the more events we have where they can meet up
• 10:28
  the first time I met ocular melanoma patients
• 10:30
  I was like oh
• 10:31
  my god these are my people and
• 10:33
  and it's important so yes
• 10:36
  awareness is important yes
• 10:37
  community engagement is important
• 10:39
  but honestly
• 10:41
  what's important is bringing us together as a community
• 10:44
  because that is what I needed when I was diagnosed
• 10:47
  I needed people
• 10:48
  I needed something tangible to hold on to
• 10:51
  that I could say this is what I have
• 10:54
  and it has a real name and it is a real thing
• 10:56
  and even though it's rare
• 10:58
  it's out there and these people are all working with me
• 11:02
  together to get through it
• 11:04
  and it's a support system and
• 11:06
  and that's why it's I we keep them going
• 11:09
  and we keep building new ones
• 11:11
  because patients like it they need it
• 11:15
  they thrive on it they want to be involved in it
• 11:19
  absolutely so
• 11:20
  I'm gonna read you guys a list
• 11:21
  of all the 5K locations that we currently have cause
• 11:25
  like she said a couple did get discontinued
• 11:27
  so Raleigh Durham
• 11:28
  that's the one that we just had for Eye Patch Day
• 11:31
  Jupiter Florida
• 11:33
  Minneapolis Minnesota
• 11:35
  Palo Alto California
• 11:37
  Seattle Washington
• 11:39
  Scottsdale Arizona
• 11:41
  those are the ones that are for the rest of the year
• 11:45
  but previously this year we had
• 11:47
  Orlando Tampa Philadelphia
• 11:52
  Dallas and Houston
• 11:55
  so that's a good representation across the country
• 11:59
  we've got several if you're close to one
• 12:02
  try to make it if you can
• 12:04
  and we do have people come from out of state
• 12:06
  because maybe if you're you know like we just had
• 12:11
  somebody come up from South Carolina to the Raleigh one
• 12:13
  so if you can make it
• 12:15
  do try and we say that with all our events
• 12:18
  because they're all so worth it
• 12:19
  once you go and you meet everybody
• 12:21
  and you have so much fun
• 12:23
  it's such a meaningful experience that stays with you
• 12:26
  so the 5 KS just like any other event are so worth it
• 12:30
  I agree and
• 12:31
  and it's fun to bring your family
• 12:33
  you know and
• 12:33
  the families meet
• 12:34
  and then you know that you start seeing the same people
• 12:37
  and them growing up like
• 12:39
  there was one patient that their child couldn't come
• 12:43
  and I remember way way back
• 12:46
  my granddaughter and his child running um
• 12:49
  together at the 5K
• 12:51
  and coming in first and second for youth and
• 12:53
  and they looked forward to seeing each other
• 12:56
  you know now they're a teenager
• 12:57
  so now it's not that important
• 12:59
  so they're kind of like eh
• 13:00
  but but she didn't come this year
• 13:03
  and I was like oh
• 13:04
  darn it miss her
• 13:05
  but um
• 13:07
  you know you you
• 13:08
  you see the kids grow up you see the
• 13:10
  you see the same people
• 13:11
  and it's fun to see that because it's um
• 13:16
  part of the community
• 13:16
  it's about feeling a sense of belonging
• 13:18
  and these are my people kind of a thing
• 13:21
  so that's why it's important to me
• 13:24
  definitely and they're a lot of fun
• 13:26
  um
• 13:28
  some of them have a raffle
• 13:29
  not all of them but the bigger ones have raffles
• 13:32
  and so you can buy raffle tickets
• 13:34
  that's another way that the race generates funds
• 13:37
  and then you're eligable to win prizes
• 13:40
  and I just think that we should tell a story real quick
• 13:43
  because I love this story
• 13:45
  but we were just at the Raleigh 5K
• 13:47
  and one of the prizes we had brought
• 13:49
  was this duffel bag with eyeballs all over it
• 13:52
  and it's got A Cure In Sight's logo on it
• 13:54
  it's on our website if anybody would like to order one
• 13:56
  you can go to ACureInSight.org and get yourself one
• 13:59
  but one of our patient's wife was there
• 14:02
  and she was like that bag's amazing
• 14:04
  if that's on the store I'm gonna buy it
• 14:05
  and we said it is on the store
• 14:07
  and so she went and put it in her shopping cart online
• 14:10
  and she said if I don't win it
• 14:11
  I'm gonna buy it and guess what
• 14:14
  she won it and we were so excited
• 14:16
  we all were just like
• 14:17
  congratulating her
• 14:18
  we were all just as excited as she was
• 14:21
  and it was just such a
• 14:22
  just such a fun thing to see somebody win it
• 14:25
  who wanted it so badly
• 14:26
  that we were so happy they got it
• 14:28
  and you know
• 14:29
  every raffle prize you're excited for the winner
• 14:31
  but that one was like extra special
• 14:34
  you get really excited when they
• 14:35
  get excited when they win something that they want
• 14:37
  this this is not an ocular melanoma but um
• 14:41
  that we do movie baskets
• 14:42
  where we put popcorn and candy
• 14:44
  and a gift card for a movie theater ticket
• 14:48
  in a big bag in a big um
• 14:50
  popcorn bucket and this young girl won it this weekend
• 14:56
  and oh
• 14:56
  my god she danced and jumped and whooped and hollered
• 14:59
  she was so excited over this movie theater basket
• 15:03
  but it's just fun to watch them yeah
• 15:06
  It's just exciting to win I don't even think it's necessarily what the prize is
• 15:10
  sometimes it's just the fact that you won it
• 15:13
  especially for kids
• 15:15
  oh yeah yeah
• 15:16
  and I try I do try
• 15:17
  when we're putting the baskets together
• 15:18
  I do try to make them fun
• 15:20
  like we always have a movie theater basket at every 5K
• 15:23
  some 5K we have to have two
• 15:24
  because the competition gets pretty fierce
• 15:27
  yeah
• 15:28
  and that it's just
• 15:29
  that's just our basket
• 15:30
  and then the other thing we always have is a dog basket
• 15:33
  Barkbox plugs for
• 15:34
  Barkbox usually gives us a gift certificate for $25
• 15:37
  and then we put some fun dog stuff in it
• 15:39
  and that is a hot ticket item too
• 15:42
  and if I can find eye related dog items
• 15:44
  then it's also a plus so we try to make it fun and
• 15:47
  and creative and and make people really excited to
• 15:51
  to buy some raffle tickets to give us some extra money
• 15:53
  that we can help support patients but with
• 15:56
  yeah and the dog basket this year
• 15:58
  this little boy won it
• 15:59
  and he said he was getting a puppy in two weeks
• 16:02
  and I think every adult just like melted
• 16:05
  they were all like oh
• 16:07
  so cute
• 16:09
  so he's ready for his puppy now
• 16:12
  that that was
• 16:13
  that was yeah
• 16:14
  he was a sweet kid
• 16:16
  and we tried to bring the kids and get them involved
• 16:18
  the kids were helping us do um
• 16:21
  pull raffle tickets and announce the winners
• 16:23
  so that was fun they were going in line
• 16:25
  and one would call and go to the back of the line
• 16:27
  the next one would be and go to the back of the line
• 16:28
  and they just kept rotating through
• 16:30
  and they had so we try to make it fun for everybody
• 16:33
  and get everybody involved as well
• 16:36
  yeah and sometimes there's a DJ or a face painter
• 16:39
  or different things depending how big the race is
• 16:42
  so it gets like the Raleigh one
• 16:43
  it was like a party we had the DJ
• 16:45
  the face painter we were decorating eye patches
• 16:48
  we had the raffle it was
• 16:50
  it was a full up party so definitely check out a 5K
• 16:52
  they are so much fun so let's get back to the story
• 16:57
  so you decide you're gonna branch out on the 5 K's
• 17:01
  was it hard did you face obstacles
• 17:04
  or did they all just come together seamlessly
• 17:05
  I think I know the answer
• 17:08
  haha
• 17:10
  I wish things were easy and would come together
• 17:12
  seamlessly but that is never in the stars unfortunately
• 17:17
  we've had our rocky roads with some of the 5 K's
• 17:19
  some of the parks we hired a guy that was gonna do
• 17:21
  produce all of our 5 K's that didn't work out very well
• 17:25
  we had some big oopses
• 17:27
  we've had 5Ks that a lot of people signed up
• 17:31
  but Philadelphia two years ago
• 17:33
  it sleeted that morning and they were calling for snow
• 17:35
  it was so cold we had over 100 people registered
• 17:39
  and only 35 came out
• 17:42
  um one year at Palo Alto
• 17:44
  for those of you who are not familiar
• 17:46
  it doesn't usually rain in the summertime in California
• 17:48
  it just they get their rain in the
• 17:50
  in the wintertime
• 17:51
  so we never prepare for rain in Palo Alto ever
• 17:56
  and they had this freak thunderstorm
• 17:58
  which also California is not a big thunderstorm state
• 18:02
  it's just they get rain
• 18:03
  but they don't get those big thunderstorms
• 18:06
  so the morning before the race
• 18:07
  I'm on the phone with Doctor Mruthyunjaya
• 18:09
  and we're like do we call it
• 18:11
  do we do it what do we do
• 18:12
  and I'm sitting in the parking lot just waiting
• 18:15
  and the skies opened up and the sun came out
• 18:19
  and we said okay
• 18:20
  we're gonna go and we went for it
• 18:22
  and it stayed clear until the last people walk
• 18:26
  who were walking came in it started to sprinkle again
• 18:29
  we were able to get through and
• 18:31
  and be done before it started to rain again
• 18:34
  but that was like something we had never planned for
• 18:36
  because it does not rain in Northern California
• 18:39
  in the summertime just does not
• 18:41
  but except for that year and it's never done it again
• 18:44
  and um
• 18:45
  this is
• 18:45
  I don't even know how many years we've done Palo Alto
• 18:48
  but we had to take the covid break
• 18:50
  um
• 18:51
  but there's this seems to be
• 18:53
  you know there's
• 18:53
  there's things like that totally out of your control
• 18:56
  um we have had um
• 18:58
  vendors not show up
• 19:00
  and so we don't have enough tents or tables
• 19:02
  we've had um
• 19:04
  UPS boxes get lost and not delivered
• 19:07
  and we don't have metals
• 19:09
  um there's been all kinds of snafus
• 19:11
  and they
• 19:13
  I don't think people understand
• 19:14
  quite the amount of time it takes
• 19:16
  it takes us a lot of time to get one planned
• 19:19
  going through the permitting process
• 19:21
  getting the insurance you know
• 19:22
  just doing all of the things that we need to do to
• 19:25
  to be able to have it at the park
• 19:27
  and then to be able to pull it off um
• 19:30
  and make sure everything gets done
• 19:32
  and organized and delivered and um
• 19:36
  it it's a big lift
• 19:37
  it's not they're not
• 19:38
  they're not quick and easy
• 19:41
  yeah and I think like
• 19:42
  permits and insurance
• 19:43
  those are kind of invisible things that
• 19:45
  if you don't know you have to have it
• 19:47
  you wouldn't know
• 19:48
  so most people probably wouldn't even realize that
• 19:52
  that's a huge piece of it
• 19:54
  yeah if you don't have a permit at a park
• 19:57
  they don't like that
• 19:58
  and they will come and escort you and ask you to leave
• 20:02
  and don't ask me how I know that one
• 20:06
  through no fault of her own
• 20:08
  no no
• 20:09
  we hired this guy that was supposed to do our 5K and
• 20:12
  you know take it all off of me
• 20:14
  and it was great and
• 20:15
  you know we were in Miami and found out oh
• 20:18
  he never finished the permitting process
• 20:20
  and yeah
• 20:22
  so things happen you should tell that story
• 20:27
  the whole story now
• 20:30
  oh oh
• 20:31
  so it's an embarrassing story
• 20:33
  we were getting oh yeah
• 20:35
  I can tell it we were getting ready for Miami and
• 20:38
  and
• 20:40
  um they
• 20:41
  they the
• 20:42
  our this gentleman
• 20:43
  so I shouldn't even call him a gentleman
• 20:44
  a man um
• 20:45
  that was doing our 5Ks
• 20:48
  for us was getting paid to do the 5Ks
• 20:50
  changed the park at the last minute
• 20:52
  and blamed it on the city
• 20:52
  and we're like oh
• 20:53
  that's weird but we went ahead and went for it
• 20:56
  so we are at the park and it's Laura
• 21:00
  somebody who volunteers for us was there
• 21:02
  Danet was there I was there
• 21:03
  we had some other patients that were there
• 21:05
  Lauren was there and we're all setting up
• 21:09
  doing fine and the
• 21:10
  the park people kept asking us questions
• 21:12
  do you have a permit where's your permit
• 21:14
  and I'm like that guy over there
• 21:15
  he's got everything and I'm not paying attention
• 21:17
  cause I'm trying to get everything set up
• 21:21
  and I start looking around
• 21:22
  and there seems to be an awfully big police presence
• 21:24
  happening in this park and I'm thinking
• 21:28
  this is weird okay
• 21:29
  so I just keep going I'm thinking
• 21:31
  he didn't pick a very safe park for us to go to
• 21:33
  look at all these police officers cause
• 21:36
  I'm a little slow and I don't always catch on
• 21:39
  and then I one of them came up and said
• 21:41
  I need to talk to you
• 21:43
  and told me that we did not have a permit
• 21:45
  and that the gentleman
• 21:46
  who we had paid to set this race up
• 21:50
  had produced a permit that was forged
• 21:53
  and that not only was he going to jail
• 21:56
  but I was going to jail
• 22:00
  and I was like but I can't go to jail
• 22:05
  you don't understand I can't go to jail
• 22:07
  I knew nothing I didn't have anything to do with this
• 22:10
  and
• 22:10
  the amount of police that came into that park was like
• 22:13
  a SWAT team they came in in SUVs
• 22:17
  they came in patrol cars they came on golf carts
• 22:21
  they came on Segways and they came on ATVs
• 22:26
  it was it was
• 22:28
  there were more people
• 22:29
  more police in that park than there were anybody else
• 22:32
  so they told us
• 22:33
  we had to immediately take everything down and um
• 22:37
  first they told us we couldn't have the raffle
• 22:39
  because the raffle wasn't permitted
• 22:40
  so we took the raffle down
• 22:42
  then they told us okay
• 22:43
  now you can't you're not
• 22:44
  you just all have to leave
• 22:45
  because this is getting too much
• 22:47
  and luckily they did not arrest me
• 22:50
  and we no longer use him that was we yeah
• 22:54
  we don't use him anymore
• 22:56
  clearly
• 22:58
  ha ha
• 23:01
  but it was very traumatic for all of us
• 23:03
  it was very traumatic
• 23:05
  I think this is a nice illustration though
• 23:07
  of the hiccups along the way
• 23:09
  you know through no fault of your own
• 23:10
  you hire a person you assume they've done their job
• 23:13
  and then you almost get arrested
• 23:15
  it's a nice story
• 23:17
  well it's a story
• 23:19
  it's
• 23:19
  it's a part of the Lookin' For A Cure journey for sure
• 23:23
  but um
• 23:24
  also that's why we no longer have Miami 5Ks
• 23:27
  if people are wondering why we don't go back to Miami
• 23:30
  we're too embarrassed
• 23:34
  no I can't do it
• 23:36
  I just can't so we're in Jupiter
• 23:38
  which is not far but anyway it's
• 23:41
  we're going we're in Jupiter now so that's alright
• 23:45
  yeah it was
• 23:46
  it was terrible
• 23:47
  I've never been so embarrassed and humiliated and
• 23:50
  and I didn't even have the whole story until later
• 23:52
  and it's like oh my gosh
• 23:54
  and how did this happen
• 23:55
  and how do you explain to everybody what happened and
• 23:58
  oh yeah
• 24:00
  I'm sure we didn't handle it well
• 24:02
  but it was kind of chaotic to even handle anything
• 24:05
  we were just like what do we do
• 24:08
  that's a big curveball thrown at you
• 24:09
  that you thought you've done everything right
• 24:12
  but surprise you haven't
• 24:13
  and now you're going to jail maybe
• 24:15
  well yeah
• 24:16
  cause I and just to let
• 24:18
  for context
• 24:19
  we paid this guy $5,000 a race to set the race up
• 24:23
  the the whole thing was
• 24:24
  he was supposed to get the permitting
• 24:26
  and get everything
• 24:26
  all we had to do was show up with our stuff
• 24:28
  and everything was supposed to be taken care of
• 24:31
  and I should have probably realized
• 24:33
  when there wasn't a start finish line
• 24:35
  but he said well
• 24:36
  they don't allow inflatables like
• 24:38
  oh OK
• 24:38
  but shouldn't there be a flag or something
• 24:39
  well he was just trying to slide under the radar
• 24:43
  wow yeah yeah
• 24:47
  so now she does it herself for free
• 24:50
  we do everything in house
• 24:52
  yeah for free
• 24:53
  yeah I'm ready to go to one
• 24:56
  to Jupiter to our next one
• 24:59
  yes if you didn't listen to our previous episodes
• 25:01
  melody does not collect a salary
• 25:03
  she works for free and she works very much full time so
• 25:08
  yeah
• 25:12
  some days I wanna quit it's been a tough month
• 25:15
  hahaha
• 25:18
  we're going into summer now
• 25:20
  so will things be calmer for you going into summer
• 25:24
  no
• 25:26
  well well
• 25:29
  no cause we got um summer
• 25:33
  summer for me now is it gets a little easier
• 25:37
  we've got um
• 25:38
  the medical meetings will be out of the way
• 25:40
  the races start slowing down
• 25:42
  there's not so many but then we've got looking the
• 25:45
  I mean I'm sorry
• 25:46
  the Eye Believe um
• 25:47
  patient meeting coming up in Dallas
• 25:50
  that's a big lift
• 25:51
  so we're really launching into getting that going
• 25:54
  um so then that'll take up time
• 25:57
  and then here comes fall again with
• 26:00
  you know 3 5Ks
• 26:02
  boom boom boom
• 26:03
  so it's a lot
• 26:04
  a lot of travel that I don't much enjoy anymore
• 26:08
  yes you travel constantly
• 26:11
  you're always gone
• 26:13
  and I'm turning into a homebody that likes to be home
• 26:15
  so it's kind of ugh
• 26:16
  but it's alright
• 26:19
  nobody else will do it
• 26:20
  if anybody else would like to volunteer to take my seat
• 26:22
  I would love to give it to you
• 26:25
  if anybody would like to
• 26:27
  and also we're looking for board members
• 26:30
  oh yeah always
• 26:34
  the board is all patients
• 26:35
  so if you are a patient and you're like man
• 26:37
  I would really love to get involved and pay it forward
• 26:40
  take a little bit off of Melody's plate
• 26:42
  you can apply to be a board member
• 26:44
  and then you can go on some of these trips in her place
• 26:48
  and um
• 26:49
  your travel is compensated
• 26:50
  so you're you're not coming out of pocket
• 26:53
  you can um
• 26:54
  where did you just go
• 26:55
  AACR you're gonna go to ASCO
• 26:58
  what else
• 27:00
  I went to
• 27:03
  um in April I was in Philadelphia
• 27:05
  then I went to AACR in San Diego
• 27:07
  and then I went to Napa for the swing for sight
• 27:10
  and then um I went to Raleigh
• 27:13
  cause I don't live in Raleigh
• 27:14
  I went to Raleigh for the 5K
• 27:15
  and now I'm going to Palo Alto
• 27:17
  and then I'm going to ASCO
• 27:19
  and then I'm home for a week
• 27:20
  and I go to Milwaukee then I'm home for three weeks
• 27:25
  and I go to Palo Alto home for a week
• 27:28
  go to Seattle home for a week
• 27:29
  I have August off I think
• 27:31
  right now knock on wood
• 27:32
  and then September
• 27:34
  we think we're gonna have a new 5K in Connecticut
• 27:37
  and then um
• 27:38
  October we're at um
• 27:42
  the I believe
• 27:43
  and another um
• 27:44
  meeting I have to go to
• 27:45
  and then November is another meeting in with um
• 27:49
  Doctor Mruthyunjaya and Stanford
• 27:51
  and 3 5Ks
• 27:53
  so it's a lot plus
• 27:55
  I have to keep everything going uh here at home
• 27:58
  right and before all of that
• 28:00
  you were in Brazil for ISOO
• 28:02
  I was in Brazil yes Brazil
• 28:06
  yeah and I think that is an important thing to stress
• 28:09
  is when we do travel
• 28:10
  we have to get all of our homework done ahead
• 28:12
  so that we can be off work while we travel for work
• 28:17
  and then we have to come home and dig ourselves out
• 28:20
  yes and answer a lot of emails
• 28:23
  yeah it's
• 28:24
  it's hard people think oh
• 28:26
  it's so great to travel
• 28:27
  you get to travel and see places
• 28:28
  but then it it just compounds your workflow
• 28:32
  because there's so much work
• 28:33
  for the event that you're doing
• 28:35
  that's not your normal work
• 28:36
  but then your normal work has to get done
• 28:38
  and so you know
• 28:39
  it's kind of it's it's hard
• 28:42
  yeah so
• 28:43
  if you would like to apply to be a board member
• 28:45
  or a volunteer or work with us in any capacity
• 28:48
  and you would like to travel to some of these um
• 28:50
  things as an A Cure In Sight member
• 28:53
  let us know shoot us an email
• 28:55
  and maybe we could make that happen for you
• 28:58
  yeah
• 28:59
  except we can't pay you because we don't have any money
• 29:02
  no no
• 29:03
  but but you do
• 29:04
  but you do get your stuff compensated
• 29:06
  so you're not coming out of your pocket
• 29:08
  but you're not making a profit either
• 29:10
  you're just you're just getting to go
• 29:13
  one day we will have money
• 29:14
  that we can pay somebody cause right now um
• 29:19
  we don't have the money for that so
• 29:23
  you know we just
• 29:24
  we need more donations we need more sponsorships um
• 29:28
  you know all the things
• 29:29
  so we're working on that
• 29:31
  and if you know of anybody who is like
• 29:34
  oh man
• 29:34
  my friend owns a company
• 29:35
  and they need somewhere to donate for their taxes
• 29:38
  tell them about us
• 29:39
  because they don't have to be related to eye
• 29:42
  or cancer or health anybody
• 29:44
  I mean we just had Nintendo sponsor the Seattle 5K
• 29:47
  could be literally any company
• 29:48
  if they just need somewhere to put their money
• 29:50
  for a tax write off tell them about us
• 29:54
  right and
• 29:56
  you know this
• 29:57
  this was not part of my life before I was diagnosed
• 30:00
  it this was not on my radar anywhere
• 30:03
  I was out doing landscaping and living
• 30:05
  you know a fairly decent life and doing OK
• 30:08
  you know I got to work outside
• 30:09
  I got you know
• 30:11
  it wasn't the a glamour job
• 30:12
  but it it was creative and I enjoyed it
• 30:15
  and I liked meeting people
• 30:17
  and it was a great job for me
• 30:20
  um I did not have any experience
• 30:22
  in any of the stuff that we're doing here
• 30:24
  nothing I knew nothing about it
• 30:26
  I just thought we somebody needs to do something
• 30:29
  because I don't want one more patient to feel
• 30:32
  like I felt when I was diagnosed
• 30:34
  and now when I talk to patients or patient's families
• 30:38
  I can tell them my experience
• 30:40
  plus I tell them the community's experience
• 30:42
  you know some patients feel this way
• 30:44
  some patients experience this
• 30:47
  there's there's a good um
• 30:50
  balance and
• 30:51
  it gives them a little bit of an insight
• 30:53
  into what they're looking for and
• 30:56
  but like I said I don't have any training in this
• 30:59
  I was not a social worker
• 31:01
  only medical I knew was cause my mom was an RN
• 31:05
  and then the stuff I've learned
• 31:07
  I've just learned from listening
• 31:09
  and being a part of the community
• 31:11
  so I don't have a a background in non profit work
• 31:15
  or medical or social work or any of that
• 31:18
  you know I was in sales and marketing and design
• 31:22
  and that's what my whole life has been
• 31:26
  so this is a a it's a little out of my comfort zone but
• 31:34
  I made a commitment and that's where we're at
• 31:36
  so sometimes I complain about it
• 31:37
  but you know it's my own doing
• 31:40
  well I think any job
• 31:42
  no matter how much you love it
• 31:44
  you can complain about it
• 31:46
  I mean even kids
• 31:47
  like we love our kids
• 31:48
  but I mean
• 31:48
  raise your hand
• 31:50
  if you've never complained about your kids
• 31:51
  there's never there's not gonna be hand up right
• 31:53
  so it's okay to have a moment where you're like
• 31:57
  oh I
• 31:57
  I love this normally but today I don't
• 31:59
  or today I'm just frustrated and
• 32:01
  you know when you're almost arrested
• 32:03
  I feel like that would be a frustrating day
• 32:05
  that you wouldn't love it
• 32:08
  yeah that story hasn't gotten out
• 32:10
  this is like
• 32:10
  the first that people are gonna hear of that
• 32:12
  they'll be like oh
• 32:14
  everything makes sense
• 32:15
  there's stuff that happens behind the scenes
• 32:17
  most people don't know about
• 32:18
  this is this is an exclusive story
• 32:22
  so one thing I will say
• 32:26
  is every time we have a rule that people don't like
• 32:29
  our rule it's because something happened
• 32:32
  so we have a rule now our 5Ks
• 32:34
  we make sure we do everything here
• 32:37
  we make sure we get the permits
• 32:38
  we make sure we hire the vendors
• 32:40
  because we don't trust other people anymore
• 32:44
  you know our financial services that
• 32:47
  you know assistance for patients
• 32:48
  it has rules why
• 32:50
  because people made us have rules
• 32:53
  so everything that we do that might seem not fair or
• 32:56
  like well
• 32:56
  how come why do you do it that way
• 32:58
  well because people have forced us to have rules
• 33:02
  because things happen
• 33:04
  and also I mean
• 33:05
  if you had enough funding to pay for all patients
• 33:11
  all bills you would do it
• 33:14
  oh of course
• 33:15
  of course
• 33:16
  but it's just not the reality
• 33:18
  when you only have so much you have to decide to give it to the most deserving
• 33:22
  and you have to figure out who is the most deserving
• 33:25
  and some people are gonna be offended
• 33:26
  that they're not in that bucket
• 33:28
  but really
• 33:30
  be grateful you're not in that bucket
• 33:32
  if we've ever said no to your financial aid
• 33:35
  be grateful
• 33:35
  because that meant somebody had it worse than you
• 33:38
  and you know that's
• 33:39
  that's just life
• 33:40
  if we would love to fund everything for everybody
• 33:43
  but again send us those sponsors
• 33:46
  if you know anybody and help us get that budget up
• 33:49
  and then maybe we can
• 33:51
  well and
• 33:52
  you know there's
• 33:53
  you know we're doing
• 33:54
  we do fundraisers and we ask for funding and
• 33:56
  you know we
• 33:57
  we are constantly looking for people
• 33:59
  to give us large chunks of money
• 34:01
  um it just doesn't it's just not there
• 34:05
  people have asked you know
• 34:07
  why this is kind of getting out of my story
• 34:09
  but we'll just cover it anyway
• 34:11
  people have asked
• 34:12
  why we put so much money into patient education
• 34:15
  that we could put into giving patients more money
• 34:19
  the problem is that the money for patient education
• 34:21
  doesn't come from general donations
• 34:23
  it comes from sponsors
• 34:25
  sponsors can't give us money for patient
• 34:28
  financial assistance it's kind of against their rules
• 34:32
  um they can give us money to pay for travel
• 34:35
  to go to their clinical trials
• 34:37
  so they can give us money and say okay
• 34:39
  patients that need this for clinical trial travel
• 34:42
  we can pay for that
• 34:44
  but they cannot give us money to pay somebody's rent
• 34:47
  mortgage or food
• 34:49
  they just it's just not
• 34:50
  they have everything that they do
• 34:52
  has to be tied to some kind of
• 34:54
  an educational component for
• 34:56
  for patients and 5 K's
• 34:59
  we have a you know
• 35:00
  we have sponsors
• 35:02
  pharmaceutical sponsors that will sponsor those
• 35:04
  but we do we do give education at
• 35:07
  at any of our events
• 35:09
  but we can't take money from a sponsor
• 35:13
  that gave us money for a podcast
• 35:15
  and put it to towards financial assistance
• 35:18
  but because they're paying for the podcast
• 35:20
  that means any donations that we get
• 35:22
  doesn't have to pay for the podcast
• 35:25
  so that's that's how it works
• 35:27
  is that the general donations
• 35:29
  is what fuels the patient support
• 35:32
  and some of our other programs and our admin cost
• 35:37
  absolutely
• 35:39
  and I didn't know that until I got into this
• 35:41
  because I didn't have any background in it
• 35:42
  so I I Learned along the way
• 35:45
  so it's a lot of education
• 35:47
  so we have several 5 Ks like we said
• 35:49
  and there's probably gonna be a new one in Connecticut
• 35:52
  that we're working on
• 35:53
  so if there's one near you and you're not a runner
• 35:58
  and you're going oh
• 36:00
  if it was something else
• 36:01
  I would love to come see everybody
• 36:02
  but I am not a 5K person what do you say to them
• 36:07
  come anyway and hang out with us cause we're so fun
• 36:12
  and I I don't run
• 36:14
  if I run you better run faster than me
• 36:16
  cause something's gonna get you
• 36:17
  because I I'm not a runner and I don't even walk
• 36:20
  um so the 5 K's
• 36:22
  I hang out and you're welcome to hang out
• 36:24
  but you're also welcome to volunteer
• 36:26
  we would love volunteers we were blessed at Raleigh
• 36:30
  to have 17 volunteers
• 36:31
  from the Duke Eye Center surgical team
• 36:34
  and oh my gosh
• 36:35
  were they amazing they just
• 36:37
  they jump in every year
• 36:39
  and just take out a bunch off my plate
• 36:41
  which I appreciate and they're so good
• 36:43
  and they're so wonderful and
• 36:45
  you know shout out to Duke Eye Center
• 36:47
  um but come be a volunteer
• 36:49
  come hang out you know
• 36:50
  we we have a raffle and um
• 36:52
  that's always fun to volunteer for
• 36:54
  we put out snacks
• 36:55
  so we need people to watch the snack table
• 36:57
  um
• 36:59
  like
• 36:59
  if we do a eye patch decorating or anything like that
• 37:02
  we need help there we need sometimes
• 37:03
  just help directing people on the course
• 37:06
  so there's lots of um
• 37:08
  there's a lot of things that we need help with
• 37:09
  so come volunteer come
• 37:11
  come hang out with us you know
• 37:13
  you don't have to participate
• 37:14
  in the actual walking or running part
• 37:17
  that's right and you can even just be a cheerleader
• 37:20
  you can just say I'm just here to cheer people on
• 37:22
  and that's fine too
• 37:24
  yeah yeah
• 37:25
  some people just come and hand out medals and
• 37:28
  you know clap when people go across the finish line
• 37:31
  and they like that
• 37:33
  yeah the runners like it when people cheer them on
• 37:35
  they get really excited
• 37:37
  they do
• 37:37
  and then they do funny things when they cross the line
• 37:39
  and that's my favorite part
• 37:40
  is watching
• 37:41
  who gets really creative with their finish line
• 37:45
  we had some pretty good ones in
• 37:46
  in Raleigh we had a couple good ones in Philadelphia
• 37:50
  Tampa was a little slow this year
• 37:52
  I don't we didn't have really great ones in Tampa
• 37:55
  well hopefully um
• 37:57
  there's always good ones in in Palo Alto though
• 38:00
  there's always great ones there
• 38:01
  so always look at the photos because they're great
• 38:04
  we have a good group we have a lot of fun
• 38:07
  yeah and that's another thing
• 38:09
  actually to mention
• 38:10
  we always have a photographer
• 38:12
  and those photos are free
• 38:13
  so they go take pictures of the runners on the course
• 38:17
  and they try to get them
• 38:18
  as they're coming across the finish line
• 38:19
  and then
• 38:20
  you get to have professional photos of your run
• 38:22
  and those are always um
• 38:24
  available for free downloads
• 38:27
  um so that's
• 38:28
  that's a really cool thing too
• 38:33
  yeah
• 38:35
  yeah they like to
• 38:37
  we have some places are better than others
• 38:39
  but usually they get kind of
• 38:40
  engage the crowd to get them to do cool things
• 38:45
  yeah
• 38:47
  they are gonna go to LookinForACure.org
• 38:50
  or you can go to ACureinSight.org
• 38:53
  and there's a a thing for 5 K's in a under events
• 38:56
  and you can get there either way
• 38:59
  um when you go to sign up
• 39:01
  virtual or in person tell them the specifics of virtual
• 39:06
  virtual means that you're gonna participate from home
• 39:09
  so you don't technically have to walk or run
• 39:12
  but some people do and put their time in
• 39:15
  um you will get a packet in the mail
• 39:18
  usually after the race just
• 39:20
  cause we get the shirts in usually right at race day um
• 39:25
  so I we don't have time to mail
• 39:27
  them out ahead of time so you get a shirt
• 39:29
  a bib a medal
• 39:31
  and a bag
• 39:33
  and it gets mailed to you
• 39:35
  so you still have all the stuff
• 39:36
  that everybody got in person
• 39:38
  but it shows up in the mail
• 39:40
  if we can get the shirts ahead of time
• 39:42
  like rally we did get some ahead of time
• 39:44
  I was able to mail them out
• 39:45
  and they got them before the race
• 39:47
  but it just was because I was at home
• 39:50
  I got them on Tuesday
• 39:52
  so I was able to pull out the virtuals and mail them
• 39:54
  so every once in a while I can do it ahead of time
• 39:57
  but not usually cause usually I'm traveling
• 39:59
  so I come in the day before the 5K
• 40:02
  and the shirts are there
• 40:03
  but then I'm not able to mail them out
• 40:05
  from wherever I'm at I have to wait till I get home
• 40:07
  and then
• 40:08
  so it's usually the week after the 5K that they come
• 40:11
  okay and when they sign up
• 40:13
  we would like them to start a fundraiser
• 40:15
  if possible start a team talk about that
• 40:20
  teams are so fun
• 40:21
  to get all your family and friends involved in and
• 40:24
  and create a nice team um
• 40:26
  name your team something fun
• 40:28
  uh we usually do give team awards um
• 40:30
  to the top team however many people
• 40:33
  top fundraiser um
• 40:35
  not every race we give those
• 40:37
  it usually if there's um
• 40:42
  if it's a big race then we'll
• 40:43
  we'll do all those extra um
• 40:47
  fundraiser rewards
• 40:49
  but you get a certificate if you're the top fundraiser
• 40:53
  of the top team
• 40:55
  and that money helps us to um
• 40:58
  keep doing the 5 KS and keep promoting our programs
• 41:02
  and all that good stuff but just so people know
• 41:05
  it takes us about for a regular size 5K
• 41:07
  it takes us about $5,000 just to put on a 5K
• 41:11
  so while the planning is is big
• 41:14
  the you know
• 41:15
  the price tag can be pretty hefty too
• 41:17
  some of the larger races it goes up
• 41:18
  because you gotta have medals and t shirts and timer
• 41:22
  and all that stuff is expensive
• 41:24
  so um
• 41:28
  yeah that's why we need people to sign up
• 41:30
  and people to come and do fundraisers and all of that
• 41:34
  yeah definitely cause that is the point is to be able to pay for the expense of the race
• 41:40
  plus make a profit on top of it
• 41:43
  and if a race isn't performing well and it's not bringing in money
• 41:46
  that's when they get canceled and that's what we referred to earlier
• 41:49
  that a couple got canceled cause they weren't bringing in the revenue
• 41:52
  and so we have to be careful that we keep the ones that are bringing the money in
• 41:58
  that we're coming out with enough to make it worth it
• 42:00
  versus the ones that are you know
• 42:04
  limping along we're like eh
• 42:05
  that one's not gonna make it
• 42:07
  so
• 42:08
  if we don't have the participation and the fundraising
• 42:10
  and the sponsors and all of that
• 42:12
  they can't function
• 42:13
  it's just like we say with the podcast
• 42:15
  without the sponsors and the viewers
• 42:16
  it can't function
• 42:17
  there's got to be community involvement
• 42:19
  for the sponsors to show up for us
• 42:22
  and then you know
• 42:24
  they have to be there to fund it
• 42:27
  for all of these things to work
• 42:30
  and
• 42:31
  I think that's one of the things that I never realized
• 42:33
  before I got into this space
• 42:35
  was that when you sign up and you don't show up
• 42:38
  you know it's it
• 42:40
  it has a ripple effect um
• 42:42
  you think oh well
• 42:43
  you know I don't need to go
• 42:45
  I I I
• 42:47
  I used to be that person that would just yeah
• 42:50
  I don't feel like it I'm not gonna go
• 42:52
  and now I understand
• 42:53
  the amount of work that goes in on the backside
• 42:56
  and I understand the importance of it
• 42:59
  because when you have a race and only 50 people show up
• 43:02
  that loses a lot of energy
• 43:04
  but when all 100 people show up
• 43:06
  the energy is there and it feeds off of it
• 43:09
  and then you know
• 43:10
  the the runners are running fast
• 43:12
  and it gets the other people running faster
• 43:14
  trying to keep up and it's
• 43:15
  it makes a better event
• 43:16
  so the more people that come out and participate
• 43:19
  the more energy the event has
• 43:21
  the more receptive people are
• 43:23
  to getting dilated eye exams
• 43:25
  and you know
• 43:26
  we try to make it as fun as possible
• 43:28
  and explain to them why this is an important thing
• 43:31
  so they get that message quite a lot
• 43:33
  plus they get stuff in their bags
• 43:35
  about why they need a dilated eye exam
• 43:36
  so it's a big education event as well
• 43:39
  but
• 43:40
  I didn't ever know that before I got into this space
• 43:43
  and never
• 43:43
  ever in my life did I ever want to be an event planner
• 43:47
  that was never on my bingo card
• 43:50
  and here we are event planners
• 43:53
  yep definitely
• 43:54
  definitely event planner for sure
• 43:56
  um so then
• 43:57
  one more thing I would love for you to talk about
• 43:59
  is the difference in the regular medal
• 44:02
  and the survivor medal
• 44:07
  everybody who crosses the finish line
• 44:10
  walking or running or in a stroller or whatever
• 44:13
  if they've signed up they get a medal
• 44:15
  that just is the finisher medal
• 44:17
  and this year they're little cat eyes
• 44:18
  and I don't think I have one handy here
• 44:21
  um it's look
• 44:23
  every year we our medals look like a pair of eyeglasses
• 44:27
  and that's just another way to try to remind them
• 44:29
  to get their eyes examined
• 44:31
  um and then the Survivor Medal
• 44:34
  it changes every year
• 44:35
  and it's only given to cancer survivors
• 44:38
  so we invite all everybody with ocular melanoma
• 44:41
  to come forward but then we take it a step further
• 44:43
  and we recognize all cancer survivors
• 44:45
  because it doesn't matter to me um
• 44:48
  what cancer you had cancers
• 44:50
  cancer and you survived it
• 44:51
  so you deserve a medal too
• 44:53
  so we honor all the cancer survivors
• 44:56
  with a Special Survivor Medal
• 44:57
  that's awesome and you can tell that they
• 45:02
  that it really means a lot
• 45:03
  to them just by the way they go up and get it
• 45:06
  and they're kind of beaming
• 45:07
  and you can tell it means a lot
• 45:10
  and we do introduce everybody
• 45:12
  you know we have them not
• 45:14
  don't call them up
• 45:14
  we have everybody raise their hand and say
• 45:16
  if you have ocular melanoma
• 45:17
  raise your hand and then I tell the crowd
• 45:20
  these are who you're racing for
• 45:21
  this is why you're here today
• 45:23
  and then before they get the award
• 45:25
  regular awards we
• 45:26
  we do the um
• 45:28
  bring the survivors up so people can see
• 45:30
  these are the people this is why this matters
• 45:33
  um I think
• 45:34
  I think when you put a face to something
• 45:37
  it matters more to people
• 45:39
  they'll take it more seriously
• 45:40
  than just somebody yacking at'em
• 45:43
  yeah and so it gives a face
• 45:45
  and I think that's important
• 45:48
  I know when I was diagnosed
• 45:49
  there was not a face to this disease
• 45:51
  I didn't know about it I didn't know anybody
• 45:54
  and
• 45:54
  I think that's probably one of the biggest takeaways um
• 45:57
  that of through the 15 years
• 45:59
  I have tried to put a face to ocular melanoma
• 46:02
  but not my face
• 46:04
  the face of the community
• 46:05
  it's not about me it's about the community
• 46:08
  and everybody says oh Melody Melody
• 46:10
  no it's not melody
• 46:11
  it's a whole team of us
• 46:12
  there's a whole team that makes A Cure In Sight tick
• 46:15
  that you know
• 46:17
  I might be the founder but without any of them
• 46:20
  we couldn't go forward
• 46:22
  and we've all become very good friends and a family
• 46:24
  and it's a big it's a big thing
• 46:28
  but having a face to this cancer means so much to me
• 46:35
  and in my journey the people that I've met
• 46:37
  the people I've lost the people I'm still going to meet
• 46:40
  that's what keeps it moving
• 46:42
  because that's
• 46:44
  that's the important glue that holds it all together
• 46:46
  is this community needs to have a face
• 46:49
  so every photo that Megan posts
• 46:51
  every everything that you see that has people of us
• 46:55
  every time we do a Rare Disease Day video
• 46:58
  and we just have faces of OM
• 47:00
  that's important to participate in that
• 47:02
  because we develop that
• 47:04
  because we want ocular melanoma to have a face
• 47:07
  we want people to see it and see
• 47:09
  oh wow
• 47:10
  you know there's young kids
• 47:11
  there's little kids there's
• 47:12
  there's adults young adults
• 47:15
  old adults there's all different kinds
• 47:17
  and we need a face
• 47:20
  yeah and speaking of that
• 47:22
  you guys did an amazing job with Eye Patch Day
• 47:26
  we did #PatchItForward or tag A Cure In Sight
• 47:30
  and we tried to share every single photo
• 47:34
  that either tagged A Cure
• 47:35
  In Sightor did the hashtag patch it forward
• 47:38
  if we missed any I greatly apologize
• 47:41
  sometimes it's weird
• 47:43
  Facebook doesn't show us everything we're tagged in
• 47:45
  so some of them I had to find under my personal page
• 47:48
  searching the hashtag but I did go under both pages
• 47:51
  and I did search the hashtag
• 47:52
  and I did search our tags
• 47:54
  and I tried very hard to find them all
• 47:56
  so I hope that I did find them all
• 47:57
  but there were tons and tons
• 47:59
  and so we're very grateful
• 48:01
  and we thank you for participating
• 48:03
  and putting your faces out there
• 48:05
  yeah and share your pictures from the
• 48:07
  Lookin' For A Cure or from Eye Patch Day
• 48:09
  share them on your own pages and
• 48:11
  you know
• 48:11
  email them to your friends that aren't on social media
• 48:14
  share them on if you're on the app
• 48:15
  share them on the app
• 48:16
  these things are so important because it gives a face
• 48:19
  and you know
• 48:21
  your friends might think you're the only one
• 48:23
  but
• 48:23
  when they see you with a whole bunch of other people
• 48:25
  they're like oh
• 48:25
  look at there's more people like you out there
• 48:28
  you know and
• 48:28
  and it it
• 48:29
  the more people they see with it
• 48:31
  the more I feel they'll take it seriously
• 48:34
  yeah
• 48:36
  there's less of that it's not gonna happen to me cause you see more and more people
• 48:39
  and then you go oh maybe it could happen to me
• 48:43
  yeah yeah
• 48:44
  I was just talking to a gentleman um
• 48:46
  over the weekend that was asking me questions
• 48:49
  and he had light eyes light hair
• 48:50
  light skin and he said oh
• 48:51
  I'll never get that I said
• 48:53
  well you're the perfect profile for that
• 48:56
  so you might you might rethink that
• 48:59
  yeah
• 49:02
  I never thought I'd have it either
• 49:04
  yeah
• 49:06
  nobody does nobody ever thinks hmm
• 49:09
  I'm probably gonna be one of those people
• 49:10
  that gets cancer one day for any cancer
• 49:12
  that's never on your radar
• 49:15
  well when I was diagnosed
• 49:17
  and you had a you had a
• 49:18
  a nevus on that was close to a blood vessel
• 49:21
  they watched how many years did they watch that nevus
• 49:24
  you know and there's so many people
• 49:28
  a long time and there's so many people that don't
• 49:31
  aren't told they have it and they're not watched so
• 49:34
  you know even though Megan luckily
• 49:36
  never developed ocular melanoma
• 49:38
  she was watched for it and it's a it's a big thing
• 49:42
  yeah
• 49:42
  they thought the Nevis was possibly on the blood vessel
• 49:46
  but then a few after a few years
• 49:50
  it was obvious that it wasn't
• 49:51
  so I don't know if that was just the imaging got better
• 49:54
  or my eye changed shape and it moved
• 49:57
  I don't really know but anyway
• 49:59
  they told me that it's fine now but um
• 50:01
  but you never know something could develop later
• 50:03
  so we have to be careful and
• 50:04
  yeah well
• 50:05
  next time you
• 50:07
  next time you talk to Doctor Mruthyunjaya
• 50:09
  ask him did my eye
• 50:11
  did my eye move what happened to this nevi
• 50:13
  did it move what happened to it
• 50:15
  I just think about it like this
• 50:17
  they say that um
• 50:19
  you know if you're near sided or far sided
• 50:21
  it's because the shape of your eye is changing
• 50:24
  and my vision has progressively gotten worse
• 50:27
  so I feel like it's changing the shape
• 50:29
  so who knows I don't know
• 50:31
  yeah I don't know
• 50:33
  but I'm not a doctor, just an event planner
• 50:36
  those almond yeah
• 50:38
  those almond almond shaped eyes get you
• 50:40
  they're very beautiful but
• 50:41
  you know
• 50:43
  unfortunately
• 50:45
  genetics
• 50:45
  and eye color and eye shape are not in your favor
• 50:49
  no I
• 50:50
  I can't see um
• 50:51
  and my husband actually has um
• 50:53
  2020 vision and always has
• 50:55
  until he has started using readers recently
• 50:59
  but he still doesn't need glasses for normal vision
• 51:02
  just readers and I thought
• 51:04
  you know I wonder if um
• 51:06
  he put my glasses on with like
• 51:09
  if that would show him what I see
• 51:11
  like does it work in reverse like that
• 51:12
  you know does that make sense
• 51:16
  I think it kind of yeah
• 51:18
  cause they put them on and everything is blurry
• 51:20
  right when I take them off everything is blurry so I was like
• 51:23
  I wonder if it works in reverse like that
• 51:25
  so I actually did give him my glasses
• 51:27
  and I said put these on
• 51:28
  cause this is probably what I
• 51:29
  what I see and he put them on and went
• 51:31
  oh my god and I said yeah
• 51:34
  pretty much
• 51:37
  well we can
• 51:37
  we can thank my mother for that
• 51:39
  because she was the one we have her eyes
• 51:41
  so unfortunately
• 51:42
  but she was severely nearsighted
• 51:44
  and we're following her footsteps so
• 51:47
  I'm very thankful for glasses and contacts
• 51:49
  and the fact that we can live a full life and see um
• 51:54
  when you know
• 51:55
  without those two things I mean I
• 51:58
  I couldn't even leave my house
• 51:59
  if I didn't have glasses and contacts
• 52:01
  so it's it's a huge thing that we
• 52:04
  as a society take very much for granted
• 52:07
  yeah I lost a pair of glasses in the surf in Mexico
• 52:11
  and was in Mexico blind cause my glasses got pulverized
• 52:15
  we never found them they were gone
• 52:17
  and had to figure out how I was going to function
• 52:20
  for a week in Mexico
• 52:22
  with no glasses and no contacts nothing
• 52:25
  absolutely nothing we
• 52:27
  I was lucky enough to get my eye doctor
• 52:32
  my son was in um
• 52:34
  was at home
• 52:35
  he was able to get in touch with my eye doctor
• 52:37
  get a prescription for contacts
• 52:39
  email it to me we went to a local store in Mexico
• 52:43
  and they gave me a pair of contact lenses
• 52:46
  that were enough the shelf enough to get me home
• 52:49
  and you don't like contacts
• 52:51
  and I I can't
• 52:52
  my eyes are dry so I
• 52:53
  contacts and I don't get along
• 52:55
  so I also bought big bottles of wetting fluid
• 52:57
  and I was constantly dropping stuff
• 52:59
  drops in my eyes cause soft contacts when
• 53:02
  when you have dry eyes they suck to your eyeball
• 53:05
  they don't float and so it was they
• 53:08
  they and it hurts when they do that
• 53:10
  and then you gotta peel them off
• 53:11
  and that's not that's painful too
• 53:13
  so yeah
• 53:13
  when you have dry eyes
• 53:14
  and you're trying to wear soft contacts it's not good
• 53:16
  that is a terrible feeling
• 53:18
  cause I wear dailies and when I
• 53:20
  if it's a really long day
• 53:22
  when I get to the end of the day
• 53:23
  I can't wait to get them out
• 53:24
  and I wear them fine normally
• 53:26
  but when they get dry it is awful
• 53:29
  yeah yeah
• 53:31
  so yeah
• 53:32
  draw um
• 53:34
  vision issues
• 53:35
  I don't know how we transcend it over there
• 53:37
  but vision issues are hard to live with
• 53:40
  yeah it always
• 53:41
  and vision issues are always an issue
• 53:43
  whether it's ocular melanoma or something else
• 53:45
  you add ocular melanoma onto it
• 53:47
  and there's a bunch of us out there
• 53:49
  that already have vision issues
• 53:50
  when you compound it and it's just hard
• 53:53
  it's hard to get through life on a daily basis
• 53:56
  when you just don't see well
• 53:58
  your whole world just changes
• 54:00
  I mean if you guys could see my
• 54:03
  my computer screen from my side
• 54:05
  I have a great big huge
• 54:07
  I don't know 27 inch monitor with great big
• 54:10
  huge fonts I mean
• 54:11
  everything on my computer is huge so
• 54:13
  so I can see it plus I wear glasses
• 54:16
  plus I have readers plus
• 54:17
  I have computer glasses
• 54:18
  that I have to put on when I'm doing fine
• 54:20
  like when
• 54:21
  I really have to read small things on the computer
• 54:23
  cause I can't see it
• 54:25
  yeah and
• 54:26
  and it's it's maddening
• 54:28
  maddening maddening
• 54:31
  but that's you know
• 54:32
  the hand you're dealt so you deal with it
• 54:34
  but luckily computers have big screens now
• 54:37
  and you can adjust font size
• 54:39
  yeah and on phones too
• 54:42
  yeah
• 54:44
  my font's not as big as Loren's
• 54:45
  but I got a pretty good size font
• 54:47
  but I also have the big Pro Max to phone too
• 54:49
  so that it's a bigger
• 54:50
  it's got a bigger screen to start with
• 54:52
  but my font's pretty good size
• 54:55
  I think Loren's font she can get maybe two word
• 54:58
  two words in her screen before you have to scroll
• 55:00
  cause her font's so big
• 55:02
  but yeah so it's
• 55:05
  you know it's it
• 55:06
  that's the greatest thing about this community honestly
• 55:10
  and the way that it's helped me in
• 55:11
  through these 15 years will just kind of end with this
• 55:14
  is that I have realized
• 55:16
  that I don't have it as bad as others
• 55:18
  I might not have it as good as others
• 55:20
  but I don't have it as bad as others
• 55:22
  and that I'm managing and I'm going through
• 55:24
  and I'm surviving and I'm thriving and I'm doing well
• 55:28
  maybe not as good as I had hoped
• 55:29
  maybe not what my life I thought was gonna look like
• 55:32
  looks but it's still pretty good
• 55:34
  and I'll take it
• 55:36
  cause the alternative is not good either
• 55:38
  I think that's a great way to wrap it up
• 55:40
  so to everyone watching please go to ACureInSight.org
• 55:44
  and find an event that maybe you would want to go to
• 55:47
  maybe it's a 5K maybe it's
• 55:48
  Eye Believe in Dallas this year or
• 55:51
  any of our other ones Rare Disease Day in February
• 55:54
  um we would love
• 55:56
  love love to see you truly
• 55:58
  and I do think it is meaningful and worthwhile to go
• 56:03
  if you're able to we know not everyone is
• 56:05
  but if you are it's
• 56:07
  it's worth it so we hope we see you at an event or a 5K
• 56:10
  and remember the 5K is
• 56:12
  there's a virtual component
• 56:13
  you can do it from your home
• 56:15
  you can still invite your friends and make a team
• 56:17
  you could have the biggest team
• 56:19
  and live in a completely different state
• 56:20
  so if we don't have one near you
• 56:22
  that's always an option and if you do have big numbers
• 56:26
  and you don't have one near you
• 56:28
  let us know like we said
• 56:29
  we're trying to develop a Connecticut one
• 56:31
  because there was a need we were asked
• 56:33
  so if you're like man
• 56:34
  I can get 100 of my friends together
• 56:36
  let us know we'll throw you a 5K too
• 56:40
  yeah yeah
• 56:40
  we just need a little bit of help
• 56:42
  getting it off the ground
• 56:42
  but we handle all the logistic part
• 56:44
  we just need to know a park um
• 56:48
  or a place to have one and some dates and
• 56:51
  and a lot of volunteers and a lot of interest
• 56:54
  if we can get 100 people to every 5K
• 56:56
  it makes it worthwhile for us to keep doing them
• 56:59
  and I think they're worthwhile yeah
• 57:04
  the funds they generate really
• 57:05
  are meaningful for the patients that they help
• 57:07
  so don't hear the big number of what they cost and go
• 57:10
  oh my gosh
• 57:10
  you guys are spending that much
• 57:12
  understand that they pay for themselves
• 57:14
  and then we generate funds on top of it
• 57:15
  it is it is very much a fundraiser
• 57:18
  so help us raise funds join a 5K in person or virtually
• 57:23
  invite your friends make a team
• 57:24
  start a fundraiser
• 57:25
  if you know anyone who wants to sponsor
• 57:28
  that owns a company or works for a company
• 57:30
  send them our way we love the Lookin' For A Cure 5 K's
• 57:34
  and we hope that you do too
• 57:35
  and we hope we see you at 1
• 57:37
  and we will see you guys on our next episode of
• 57:39
  Melody's 15 Years