Latest / The Eye Believe Podcast / Rare Cancer Day Spotlight: Maya Skubatch’s Story

Transcript

Rare Cancer Day Spotlight: Maya Skubatch’s Story · The Eye Believe Podcast

• 0:03
  hey everyone
• 0:04
  welcome back to the Eye Believe Podcast
• 0:06
  I'm Megan with A Cure In Sight
• 0:07
  and we have a great guest today
• 0:09
  we have Maya Skubatch welcome Maya
• 0:11
  thank you Megan
• 0:12
  nice to see you
• 0:14
  I wanted to today to share the story of a patient that
• 0:17
  uh myself
• 0:19
  uh not uveal melanoma
• 0:20
  but I call it a sister
• 0:22
  like an identical twin sister almost of uveal melanoma
• 0:25
  it's called blue nevus melanoma
• 0:27
  three years ago when I was 47 years old
• 0:30
  I felt a bump in the back of my head
• 0:33
  it was in my hairline
• 0:35
  and if I thought I hit my head or something
• 0:38
  I had a just a bruise there
• 0:40
  which was sort of odd
• 0:42
  um after a few weeks
• 0:43
  I went to my dermatologist to
• 0:45
  to have it be checked and they said oh
• 0:49
  you have a blue mole blue moles are rarely
• 0:53
  they're always benign but according to CDC protocols
• 0:57
  if it's more than I can't remember
• 0:58
  it was like a
• 0:59
  more than a centimeter or two that we have
• 1:01
  we'll take it out and biopsy it
• 1:03
  which was the only reason that they did
• 1:05
  upon receiving the results of the biopsy
• 1:07
  I was told that
• 1:08
  I have something called blue nevus melanoma
• 1:10
  never heard of it before and when I googled it
• 1:14
  there's almost nothing available online
• 1:17
  that's directed to it I was given a year of Pembro
• 1:22
  Pembrolizumab or Keytruda
• 1:23
  as an adjuvant to prevent it from coming back
• 1:26
  um and the rest of it was just well
• 1:28
  let's just hope and pray it doesn't come back
• 1:31
  uh unfortunately for me uh
• 1:33
  at the two year anniversary
• 1:34
  or about a year and a half ago
• 1:36
  it did come back uh
• 1:37
  and this time it was not superficial
• 1:39
  it was internal at that point
• 1:41
  I went back to the internet and I looked uh
• 1:44
  to see if I could find other people with blue nevus
• 1:46
  melanoma
• 1:48
  I I could not find anything
• 1:50
  there was nothing on Facebook
• 1:51
  there was nothing anywhere
• 1:54
  um in fact
• 1:56
  being seen at UCSF um
• 1:58
  they did not have any other blue nevus melanoma
• 2:00
  at the time and then
• 2:02
  I started traveling around the country
• 2:04
  to places like MD Anderson
• 2:05
  they said they've seen two other cases
• 2:07
  in the doctor I saw
• 2:08
  she said she saw two other cases in her entire career
• 2:12
  so it's been a very lonely journey for me
• 2:16
  until very recently and it has been lonely until I
• 2:20
  it started by me doing sequencing on my
• 2:22
  on my cancer
• 2:23
  to really understand what the biology of it is
• 2:27
  and it turns out
• 2:28
  that my cancer is genetically identical to uveal
• 2:30
  melanoma um
• 2:32
  so while the biology of it is identical
• 2:36
  the differences that uveal
• 2:38
  as you all know
• 2:39
  starts in the eye and blue nevus starts in a blue mole
• 2:43
  but it's the same genetic mutations
• 2:45
  and sort of similar predicament and progression
• 2:49
  when my cancer came back I
• 2:51
  and maybe it's because it's not traditional uveal and
• 2:54
  you know every
• 2:55
  it it became very clear that there's no clear um
• 2:59
  standard of care and I believe that also
• 3:02
  all the uveal melanoma patients out there
• 3:04
  are realizing that there's not a very clear
• 3:06
  standard of care
• 3:08
  which is why these patient advocacy groups become so
• 3:11
  so important um
• 3:13
  patients will uh
• 3:14
  share more information with each other
• 3:17
  than doctors will even with their own colleagues
• 3:20
  and so it's
• 3:21
  it's imperative that we all stay connected and um
• 3:24
  learn about the latest and greatest in
• 3:27
  in therapies out there
• 3:29
  um other than being a cancer patient
• 3:30
  I just wanted to share a little bit more about myself
• 3:33
  as a person um
• 3:36
  after um
• 3:38
  undergrad
• 3:38
  I actually was a cancer researcher at Genentech um
• 3:42
  working in the lab on developing cancer medicine um
• 3:46
  and later on decided to pursue a career actually in law
• 3:51
  uh and for the last 25 years
• 3:53
  I've been a patent attorney uh
• 3:56
  working with biotech companies
• 3:58
  helping them develop their
• 3:59
  their drugs and therapeutics
• 4:02
  and so uh
• 4:03
  taking my um
• 4:05
  it really you know
• 4:06
  my career has been my life for the last 25 years
• 4:09
  um taking everything that I've seen um
• 4:12
  and experienced and Learned
• 4:13
  and that has shaped me into who I am
• 4:16
  um I sort of
• 4:17
  see myself as somebody that's
• 4:19
  really championing the ability to
• 4:23
  not just sit around and and wait for
• 4:26
  for drugs to come up and and be available to us
• 4:29
  but really uh
• 4:30
  for us as a community to come together and consider
• 4:34
  what is it that we all need
• 4:36
  I mean we need each other
• 4:37
  we need companionship we need information
• 4:39
  but we also need more therapeutic options
• 4:43
  I think
• 4:43
  it's important for us to stay together on that front
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  and and really identify
• 4:48
  whether it's liver directed therapies
• 4:50
  or systemic therapies or even targeted therapies
• 4:56
  there are opportunities for all of us to
• 4:59
  to help shape that and I just
• 5:01
  continue to encourage people to stay connected
• 5:05
  uh with organizations like A Cure In Sight to uh support
• 5:10
  support these efforts so let's back up to the nevis
• 5:14
  we've heard nevis referenced as a freckle in your eye
• 5:18
  I've never heard it and I'm a layman
• 5:20
  but I've never heard of it
• 5:21
  referenced as a freckle on the rest of your body
• 5:23
  can you have a nevus anywhere
• 5:25
  or is it like in your eye
• 5:26
  or like yours was on your head
• 5:28
  could it be anywhere
• 5:29
  so the blue nevus melanoma um
• 5:34
  usually appears somewhere on your upper body
• 5:37
  so it could be a blue mole
• 5:39
  um I actually created a Blue Nevus Melanoma Foundation
• 5:42
  just to help people that have blue nevus alone
• 5:45
  just connect to one another
• 5:47
  as far as I can tell
• 5:48
  there's about 8 patients in the United States right now
• 5:51
  what's the website for your foundation
• 5:54
  it's called the name of it Blue Nevus Melanoma
• 5:58
  I think the website is like BlueNevusMelanoma.org
• 6:01
  but the name is Blue Nevus Melanoma Foundation
• 6:04
  it's there to for two reasons 1
• 6:07
  there was not a patient registry
• 6:10
  there was no way there was not even a
• 6:11
  a group for people to communicate with one another
• 6:14
  just on Blue Nevis Melanoma Research Alliance
• 6:18
  it is just so broad and it covers all melanomas
• 6:21
  not just uveal not just blue nevus
• 6:23
  and so we get drowned out
• 6:25
  uveal melanoma as you know very well
• 6:27
  is a rare cancer well
• 6:30
  blue nevus melanoma is considered an ultra rare cancer
• 6:33
  there's about 2,000 patients each year diagnosed with
• 6:38
  um uveal melanoma in the United States
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  it's not even disclosed how many are with Blue Nevis
• 6:45
  but a paper from Arizona State University
• 6:48
  doing an epidemiology study
• 6:50
  identified about 150 patients
• 6:52
  over a period of 15 years
• 6:54
  so it's about plus or minus maybe 10 um
• 6:57
  to be an ultra rare cancer
• 6:58
  it's less than one in a million people get affected
• 7:01
  with an ultra rare cancer
• 7:03
  so for that reason you know I
• 7:06
  I had to create before I even knew about A Cure In Sight
• 7:09
  I created a foundation
• 7:11
  just to try to connect with others who have Blue Nevus
• 7:15
  two people have signed on
• 7:17
  so I do have not two colleagues
• 7:19
  friends but really uh
• 7:22
  from a therapeutics perspective
• 7:25
  all of us are part of the same community
• 7:27
  as uveal melanoma and why is that
• 7:29
  because genetically
• 7:31
  the makeup and the way the cells present themselves
• 7:34
  it's the same mutation so in fact
• 7:37
  I am
• 7:39
  benefiting from the one and only
• 7:41
  medication that is solely uh
• 7:43
  designed for uveal melanoma
• 7:45
  which is Kimmtrak uh Tebentafusp
• 7:48
  it's the bi specific t cell engager
• 7:50
  I've been on it for the last 8 months
• 7:53
  I have weekly infusions and it's been able to um
• 7:59
  maintain my cancer primarily under control
• 8:03
  um it was not the first medication though that I was um
• 8:07
  given and I think part of it is maybe again
• 8:10
  slightly lack of standard of care
• 8:13
  which um
• 8:14
  it would be good to
• 8:14
  to have more of in this particular rare form
• 8:17
  so uh I
• 8:20
  I I am always shocked that the year is 2025
• 8:23
  and with all the artificial intelligence
• 8:25
  that people talk about all around us
• 8:28
  um all of the power of genomics and
• 8:30
  and proteomics and big data
• 8:33
  that we only have one drug that is approved
• 8:37
  specifically for uveal melanoma
• 8:39
  for blue nevus patients like myself
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  the only way I was able to get this treatment
• 8:46
  is because my husband just happens to work at Google
• 8:48
  which is a self funded insurance company
• 8:51
  and they were able to get the insurance company
• 8:54
  so in essence override the insurance company
• 8:56
  because I was getting denials
• 8:58
  from our insurance company
• 9:00
  Castle Biosciences is a proud sponsor of this
• 9:03
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• 9:04
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• 9:07
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• 9:07
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• 9:10
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• 9:12
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• 9:15
  to learn more visit Castlebiosciences.com
• 9:19
  these are just some
• 9:20
  of the major obstacles that we all face
• 9:23
  and uh
• 9:24
  we need to get drug companies to understand that
• 9:26
  what we have in common is
• 9:29
  all of us have a mutation in either GNA11 or GNA Q
• 9:32
  at position 209
• 9:34
  and I think this position 209 is
• 9:37
  is really critical to unify us
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  in essence drug companies
• 9:42
  and pharmaceutical companies
• 9:43
  really should use that as a way to design drugs like
• 9:48
  and as the criteria
• 9:49
  as opposed to calling it by uveal melanoma
• 9:52
  or blue nevus melanoma I don't think anything
• 9:54
  that I say here will change their approach
• 9:57
  but uh
• 9:58
  we are really the same cancer
• 9:59
  just it displays itself for the first time
• 10:02
  in a different location
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  but then it progresses and metastasizes in the same way
• 10:07
  does it ever go to your eye
• 10:09
  or does it go straight to the liver
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  it goes straight to the liver
• 10:12
  liver lung
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  I'm so glad that you're here talking to us today
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  because like you said
• 10:17
  being ultra rare
• 10:18
  most people have never heard of ocular melanoma
• 10:20
  much less uveal and then blue nevus
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  I mean I didn't even know what a nevus was
• 10:25
  let alone a blue one so I mean
• 10:27
  you were just getting like
• 10:28
  down and down and down into the weeds
• 10:30
  so I'm thrilled that you're here to talk about it
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  because raising awareness of it is huge
• 10:35
  that's our first line is to get the word out there
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  and I hope that you feel very welcome in the uveal
• 10:41
  melanoma community because it is still
• 10:44
  you know identically the same
• 10:45
  and if it's gonna be the same drugs
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  and the same things
• 10:47
  I hope that you feel very welcome and included
• 10:50
  in all of our communities
• 10:52
  I have been I have been and um
• 10:56
  I think that the community should be focusing on
• 11:00
  using our collective power to really
• 11:03
  we need to demand medicine
• 11:04
  this is um like I said before
• 11:06
  the year is 2025
• 11:07
  we have a lot of information available to us
• 11:11
  and medicine can come in different forms
• 11:13
  it can come in the form of uh immune therapy
• 11:16
  like uh vaccines uh cancer vaccines
• 11:20
  um there is a Moderna
• 11:23
  phase 3 clinical trial right now called keynote
• 11:26
  but it's for really cutaneous melanoma
• 11:28
  and they would not take people who are on
• 11:30
  active cancer hopefully
• 11:32
  they will be able to progress and actually
• 11:36
  not only treat the healthy
• 11:38
  uh but treat people who have cancer
• 11:41
  and then you know so there is vaccines
• 11:44
  uh there is um
• 11:47
  targeted therapy like liver targeted therapy
• 11:49
  that needs to be fully understood
• 11:51
  and I uh Megan
• 11:53
  I don't know if you want me to go into great details
• 11:55
  but there's so many options out there
• 11:56
  and I find that a lot of patients are not always aware
• 12:00
  of all the different options
• 12:01
  some of these options are available
• 12:04
  uh just on sheer fact of location
• 12:07
  certain hospitals will offer procedures like galvanize
• 12:11
  which is a a pulsed electric field treatment
• 12:15
  other hospitals offer Histotripsy
• 12:19
  others offer only immune embolization again
• 12:23
  different facilities offer different
• 12:25
  treatment modalities and when you talk to um
• 12:29
  a physician and this would be specifically
• 12:31
  an interventional radiologist
• 12:33
  physician to to directed
• 12:35
  for directed therapy
• 12:36
  you need to find out is like shopping
• 12:38
  not only what's available at your store
• 12:40
  but what's available across the country
• 12:42
  because they do not uh
• 12:45
  regularly share this information more broadly
• 12:49
  yeah it's definitely hard
• 12:51
  we do try to keep up to date
• 12:53
  clinical trials on our website
• 12:54
  at ACureInSight.org so
• 12:55
  always check there because a lot of times
• 12:58
  if you Google clinical trials for uveal melanoma
• 13:01
  or blue nevus melanoma
• 13:02
  just everything that has melanoma will come up
• 13:04
  it's not going to filter it for you
• 13:06
  so we do try to keep a running list on our website
• 13:09
  and again we do our best to keep up with it
• 13:12
  Kevin does a great job with it
• 13:13
  but there's always gonna be something
• 13:15
  something else so yeah
• 13:16
  we all are always looking and trying to figure out
• 13:21
  what's the best for you
• 13:22
  not necessarily what all is out there
• 13:24
  but there's there are choices and you do have a choice
• 13:27
  and you should shop around and
• 13:28
  and get you know
• 13:29
  second opinions and third opinions
• 13:32
  absolutely completely agree with that
• 13:35
  so yes I'm on Kimmtrak
• 13:37
  it's it's weekly infusions
• 13:39
  um in the past
• 13:40
  I've tried um
• 13:42
  Ipi Nivo and opdualag
• 13:43
  these are the traditional checkpoint inhibitors
• 13:45
  they did not work
• 13:46
  like they don't for most uveal melanoma patients
• 13:49
  and when I
• 13:49
  sort of reference the fact that I think that there's
• 13:52
  maybe not a good standard of care
• 13:54
  um you know
• 13:55
  the one uveal melanoma patient that I know personally
• 13:57
  who has overcome it
• 13:59
  just started directly with Kimmtrak
• 14:02
  so I think even the order of operation
• 14:05
  as I refer to it
• 14:05
  the order in which treatments are given
• 14:07
  should be given weight and thoughtfulness
• 14:10
  yeah no
• 14:11
  that's the order is very important
• 14:13
  yes yeah
• 14:13
  I personally in hindsight would go with the
• 14:16
  whatever has the highest likelihood of winning
• 14:19
  as opposed to better quality of life
• 14:22
  and I think that decisions for me were made based on
• 14:24
  well what would be maybe smaller chance of winning
• 14:28
  but easiest from a from a treatment perspective
• 14:32
  you know different approaches and and
• 14:34
  and different oncologist
• 14:36
  would lead you through different decision making
• 14:38
  just because of simple things like that
• 14:40
  I also think that you know
• 14:43
  you'll hear a lot of things about um
• 14:45
  not creating Swiss cheese of your liver and the like
• 14:49
  there are still opportunities for you to do various uh
• 14:52
  directed therapies
• 14:53
  and I think it all depends on location
• 14:55
  and it's not the one shoe fits all
• 14:58
  the other things that I've explored in the past include
• 15:02
  including using companies like Tempus um
• 15:05
  or Sengine where
• 15:06
  you could take a biopsy
• 15:07
  and they would actually do a drug screening
• 15:10
  specifically based on your biopsy
• 15:12
  now what I find
• 15:13
  and they actually came up with very interesting
• 15:15
  results for me and some uh drugs
• 15:18
  some approved some not approved
• 15:20
  both appeared to be very helpful
• 15:22
  um I've not used any of them yet
• 15:24
  I kind of did that for as a last
• 15:26
  last resort to know if there's something that
• 15:28
  there's no clinical trial on
• 15:29
  that could be useful for me
• 15:31
  off label
• 15:31
  what I think it would be interesting again is if
• 15:33
  if a group of uveal melanoma patients
• 15:36
  all ended up using Senjin
• 15:37
  in essence I
• 15:38
  my guess is that again this is me speaking
• 15:40
  just a guess
• 15:41
  that we would have a lot of overlapping molecules
• 15:44
  and at some point
• 15:44
  we should just use our collective knowledge on that or
• 15:48
  you know really have companies like Tempus
• 15:51
  do a study just for uveal melanoma right
• 15:55
  um there's power in the numbers
• 15:56
  and if each one of us feels like
• 15:58
  we all have to do a biopsy
• 15:59
  for the same exact information
• 16:00
  then that's very unfortunate
• 16:03
  totally agree how long have you been on Kimmtrak
• 16:06
  so I've been on it for eight months
• 16:09
  and I'm planning to continue
• 16:12
  staying on it for as long as it primarily holds
• 16:17
  everything under control I have had
• 16:20
  small things that maybe did not respond to Kimmtrak
• 16:24
  and I will uh
• 16:26
  you know either radiate them or just take them out
• 16:30
  if it's just easy and accessible
• 16:32
  so I think it's really important to keep
• 16:35
  everything under control
• 16:36
  if you can do it systemically
• 16:38
  then you're getting the systemic effect
• 16:40
  which is good
• 16:42
  but then not letting anything go out of control
• 16:45
  I think that's kind of been my motto
• 16:47
  let's talk a little bit more about the struggles
• 16:49
  that you've personally
• 16:51
  dealt with are there other ones
• 16:52
  I'm sure there are you know um
• 16:54
  I always get really frustrated
• 16:57
  when certain doctors will not see you
• 16:59
  unless you're there in person
• 17:01
  and oh um
• 17:04
  there are uh
• 17:05
  facilities I just don't
• 17:07
  not gonna name them
• 17:08
  but they won't meet with you on zoom
• 17:11
  and I find it frustrating because it's not about my
• 17:14
  you know my overall
• 17:15
  my blood pressure and it's not my temperature
• 17:17
  that they don't need to touch me
• 17:19
  everything that you need to see about me
• 17:21
  is all through images in any event
• 17:24
  it's true and I think that's been a huge obstacle
• 17:26
  it's not just the cost of traveling
• 17:28
  it's that if you're feeling tired
• 17:30
  and feeling sick from all your treatments
• 17:32
  to have to then fly across the country
• 17:34
  just for a one hour doctor visit
• 17:36
  if at most then it's time
• 17:39
  it's it's money
• 17:40
  and it's energy that is required to do all of that
• 17:44
  so that's an obstacle up and like time off work
• 17:47
  if you're still working or time away from your family
• 17:50
  that's you know
• 17:50
  time is precious time is precious time is precious
• 17:54
  right and when we're not yeah
• 17:56
  you know we need to all continue living our lives
• 17:59
  and being positive and happy
• 18:00
  and having it as much as we can
• 18:01
  a normal life so
• 18:03
  if a one hour doctor appointment turns into a 24 hour
• 18:06
  travel plan or 48 hours
• 18:08
  which I've had before
• 18:10
  it's not really helping the patients
• 18:12
  I think
• 18:12
  these institutions that are forcing us to travel
• 18:15
  need to really think about
• 18:16
  are they trying to help patients
• 18:18
  like what is their what is their mission
• 18:19
  what is their purpose
• 18:21
  yeah and why is the reason
• 18:23
  is it insurance or is it their own policy
• 18:26
  it's um
• 18:27
  the for example
• 18:29
  in Pennsylvania that they're telling me that it's the
• 18:33
  um you know
• 18:34
  like not the AMA but the state
• 18:36
  there's like
• 18:36
  a state bar for the doctors that requires them to only
• 18:42
  uh treat patients in person
• 18:44
  and I
• 18:44
  I always wonder if either somebody can change that
• 18:49
  or have exceptions to it right
• 18:50
  you need to have like reasonable exceptions to it
• 18:52
  so that physicians can have a phone call
• 18:55
  like I bet they would with their own uh
• 18:57
  family members if a family member was out of town
• 18:59
  would they not give medical advice on a phone call
• 19:03
  I think they would so I think we
• 19:05
  we should deserve the same level of respect
• 19:08
  as they would probably give their family members
• 19:11
  yeah um
• 19:13
  so that's
• 19:13
  that's a major obstacle that I think many of us face
• 19:16
  um in the blue nevus particular space
• 19:19
  my challenge too
• 19:20
  is not only was I not able to get the one drug
• 19:22
  I think any clinical trial too has a lot of uh
• 19:25
  exclusion criteria
• 19:26
  you got inclusion and exclusion criteria
• 19:28
  and blue nevus
• 19:29
  melanoma is not always and included criteria
• 19:33
  and so I'm always terrified
• 19:35
  like what happens when this drug really stops working
• 19:38
  I'm scrambling
• 19:39
  not only it's like finding a clinical trial
• 19:41
  which already sounds scary as it is
• 19:43
  but one that also will have
• 19:45
  me as an inclusion criteria
• 19:47
  or not me but my cancer as an inclusion criteria
• 19:50
  so that's a huge huge obstacle and then um lastly
• 19:56
  I have been really focusing on a lot of my efforts
• 19:59
  again just because of my
• 20:01
  background and my professional career
• 20:05
  in trying to start a company
• 20:08
  to develop therapeutics for blue nevis
• 20:12
  and uveal
• 20:13
  and I'll say that the funding is very challenging
• 20:17
  now we all know that the economy right now is um
• 20:20
  maybe not in its height and um
• 20:23
  probably many of you guys have seen that
• 20:25
  vcs are pulling back from making investments
• 20:27
  companies are sitting on their cash but in general
• 20:30
  I would say even without such times uh
• 20:33
  rare cancer is not an interest for most companies
• 20:38
  that's just a fact yeah
• 20:39
  rare rare diseases
• 20:41
  rare cancers are not an interest to most companies
• 20:45
  most companies are looking for big indications
• 20:47
  like obesity
• 20:50
  diabetes arthritis
• 20:52
  and I think this is where
• 20:54
  it's important for us to band together
• 20:56
  and really demand
• 20:57
  and use all of our collective resources
• 20:59
  and connections
• 21:00
  whether it's knowing people at a pharma company
• 21:03
  knowing investors people who wanna invest in the space
• 21:07
  um and
• 21:08
  and really uh
• 21:11
  making sure that our
• 21:13
  our community has more drugs available to it
• 21:17
  we need more opportunities
• 21:18
  more shots at goal
• 21:20
  yeah totally
• 21:21
  so important I agree
• 21:23
  and that the funding is a huge problem in
• 21:25
  in all rare cancers I can only imagine ultra rare
• 21:28
  but yeah I mean
• 21:31
  I love your idea about banding together
• 21:33
  and having the voices be heard and um
• 21:36
  anything we can do to help, you let us know
• 21:39
  I mean we're
• 21:40
  we're trying to get it the word out as much as we can
• 21:43
  but if you come up with other things
• 21:45
  with your foundation
• 21:46
  we are so happy to partner with you
• 21:48
  and help you in any way that we possibly can
• 21:51
  so I just emailed um
• 21:53
  multiple just profiles about companies that are
• 21:56
  they have an open IND (investigational new drug) for different cancers
• 21:59
  and this is in the vaccine space
• 22:00
  this is just as one example
• 22:02
  I sort of see vaccine as one vertical
• 22:04
  and targeted therapeutics as another vertical
• 22:07
  um and maybe even medical devices is another vertical
• 22:10
  but even within the vaccine space
• 22:12
  there are multiple companies that have an open IND
• 22:15
  they're not focusing on uveal melanoma
• 22:17
  but if there's enough of us sort of saying
• 22:19
  we want to invest in the company
• 22:20
  or we want you know
• 22:21
  but we are demanding that you do this
• 22:24
  there is support for this
• 22:25
  there's gonna be funding available for uveal melanoma
• 22:27
  a trial I think it can get done
• 22:29
  I'm positive it can get done
• 22:32
  if there's a will there's a way
• 22:34
  I I'm a big believer if there's a will there's a way
• 22:37
  absolutely I love that yes alright
• 22:40
  so let's go forward
• 22:43
  let's talk about some of the opportunities
• 22:45
  and the hope that's on the horizon
• 22:47
  we've you know
• 22:48
  we've been through our struggles now
• 22:49
  what are we looking forward to
• 22:51
  I would say that
• 22:52
  there are a few companies that would be
• 22:55
  maybe interested in this and there
• 22:57
  there are some scientists that are focusing on uveal
• 23:01
  melanoma and I think that with this community
• 23:05
  with efforts like what you're doing
• 23:06
  Megan right now that we can get funding
• 23:10
  directed to create such drugs
• 23:15
  so I I'm literally spending most of my days
• 23:20
  thinking about it and working on it and
• 23:21
  and developing pushing this forward
• 23:24
  it just requires a lot of push
• 23:26
  and um anybody that wants to help can reach out
• 23:29
  I'm happy to tell them more about it offline
• 23:32
  absolutely and we will link um
• 23:34
  your foundation as well so they can get a hold of you
• 23:37
  is there any other way they can get a hold of you
• 23:39
  are you on socials or anything
• 23:41
  I'm not really so that's yeah
• 23:44
  I'm old I'm 50
• 23:45
  no you don't you don't need that drama
• 23:49
  unfortunately not so website's the best
• 23:53
  uh yes
• 23:54
  uh or my email
• 23:56
  which is first initial last name at Gmail dot com or m
• 24:00
  s k
• 24:01
  u b
• 24:02
  a t c h at Gmail dot com
• 24:05
  for Maya Skubatch at Gmail dot com
• 24:08
  so it's MSkubatch@Gmail.com
• 24:10
  so anybody can reach me on my personal email
• 24:13
  anybody can if if you email the foundation
• 24:16
  the Blue Nevus Melanoma Foundation
• 24:18
  those emails go directly to me
• 24:19
  they get forwarded to my personal email
• 24:21
  well that sounds amazing
• 24:23
  I hope that everyone will band together
• 24:26
  and we will do some amazing things
• 24:27
  and move some mountains so that's very exciting
• 24:30
  we have to move mountains
• 24:31
  but that's really what it requires
• 24:33
  and uh it needs to be strategic
• 24:35
  so we're not wasting our energies in moving them up
• 24:38
  yes and I think banding together is
• 24:40
  the core thing that we really need to get through
• 24:45
  people's heads is
• 24:46
  we're not
• 24:46
  trying to come up with all these different ideas
• 24:49
  and go in different directions
• 24:50
  we all need to band together and do this together
• 24:53
  and cooperation is the biggest thing we need in
• 24:57
  in the whole community whether it's
• 24:59
  you know
• 25:00
  just people as people or a cancer community or whatever
• 25:03
  like we need to be on the same page
• 25:05
  we need to do it together
• 25:37
  and I should say this has been done before
• 25:39
  there have been other foundations for rare cancers
• 25:41
  where there was no drugs available to those cancers
• 25:45
  and with a sufficient focus
• 25:47
  fundraising of course and
• 25:49
  and leadership it can be done
• 25:51
  it can this scientifically can be overcome
• 25:54
  tying into that
• 25:55
  we are doing a summer campaign called sight for life
• 25:58
  um if you guys want to join that
• 26:01
  you can find it on our website
• 26:03
  and we are trying to raise $100,000
• 26:05
  a current site does fund research for this reason
• 26:08
  to move the needle and eventually move the mountain
• 26:11
  so you don't have to give from your raise on
• 26:14
  in Palo Alto I know there's a
• 26:15
  there's a run you guys do these runs
• 26:17
  which I think are amazing to get the community engaged
• 26:22
  so I'll be there on Saturday
• 26:25
  yes with my family and my friends
• 26:28
  awesome I'm excited about that
• 26:30
  and what I hope people realize is
• 26:32
  whenever we do these fundraisers
• 26:34
  whether it's sight for
• 26:35
  life or steps for sight or the 5 KS
• 26:38
  invite everyone you know
• 26:39
  put it out to your whole community
• 26:42
  and let those people donate
• 26:43
  we're not asking you to fund your own cancer
• 26:46
  we're asking you to fundraise so that you
• 26:48
  we can appeal to friends and family and neighbors
• 26:50
  and people who you know
• 26:51
  there's a lot of people that want to pay it forward
• 26:53
  and they're like hey
• 26:54
  I wanna donate 100 bucks this month
• 26:55
  I just gotta figure out where I wanna put it
• 26:57
  and then your post pops up and they go
• 26:59
  oh well that's my friend I wanna support her
• 27:01
  I'm gonna put it there um
• 27:02
  sometimes you'll tip a waitress an extra hundred bucks
• 27:04
  there's a lot of people that want to do that
• 27:07
  pay it forward so share
• 27:09
  and let them
• 27:10
  have the opportunity to help us move this mountain
• 27:13
  that's right that's absolutely right yeah
• 27:16
  that's absolutely right share it yeah
• 27:19
  so fundraise share
• 27:20
  if you need help with making a fundraiser
• 27:23
  contact us at A Cure In Sight
• 27:24
  we always have a platform
• 27:26
  available for you to make fundraisers
• 27:27
  you can even do Facebook fundraisers
• 27:29
  and we can put that all in whatever bucket you want
• 27:33
  when you um you know if you want a private fundraiser
• 27:36
  you can say where you want it to go
• 27:39
  we there's so many options
• 27:40
  is there anything else we want to hit on
• 27:42
  did we cover it all I think we did
• 27:44
  alright Maya thank you so much for joining us today
• 27:47
  this was such a great conversation
• 27:48
  and
• 27:48
  thank you for bringing us information about Blue Nevus
• 27:51
  that I didn't even know existed
• 27:53
  so I'm so thrilled that we're able to get
• 27:55
  you see a blue mole on your body
• 27:56
  you take it out
• 27:58
  I've never heard of a blue mole
• 27:59
  take it out
• 28:01
  yes OK
• 28:02
  so everybody go do a skin check
• 28:04
  call your dermatologist do a skin check
• 28:06
  look for blue moles make sure you don't have one
• 28:09
  and if you do take it out
• 28:11
  and Maya thank you for bringing us this awareness
• 28:13
  this is so so valuable and
• 28:16
  and we will link all of your information in the show
• 28:19
  notes and everybody
• 28:20
  please go follow Maya
• 28:21
  and we will see you guys all next time
• 28:24
  do your skin check thank you to all of our sponsors
• 28:27
  before we go I do wanna thank all of the sponsors
• 28:29
  this episode wouldn't be brought to you
• 28:30
  without our lovely sponsors
• 28:32
  and also please
• 28:33
  go to ACureInSight.org
• 28:34
  and sign up for our newsletter
• 28:37
  subscribe to our YouTube and our Facebook
• 28:39
  and we will see you guys next week