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Where to Turn for Help: OM Resources Beyond Treatment | The Eye Believe Podcast · The Eye Believe Podcast

• 0:03
  hey everybody
• 0:03
  welcome back to the Eye Believe Podcast
• 0:05
  i'm here with Ashley McCrary
• 0:07
  who is five years into her metastatic journey
• 0:09
  and she is actually thirteen
• 0:11
  ish or more years
• 0:12
  into her actual ocular melanoma diagnosis
• 0:16
  some of you guys probably recognize her
• 0:17
  she's been a frequent guest on the Eye Believe Podcast
• 0:20
  so Ashley
• 0:20
  thanks so much for coming back
• 0:22
  i'm so glad to be here thanks for inviting me
• 0:24
  it's always good to talk with you guys
• 0:26
  yeah absolutely
• 0:27
  and ashley and i have so much fun chatting
• 0:29
  so i hope you guys listening
• 0:30
  have a blast just listening
• 0:32
  please drop any comments you have in the description
• 0:35
  and just know that that ashley is
• 0:38
  i mean
• 0:39
  she is such a gift to the ocular melanoma community
• 0:41
  and i'm gonna do my best not to make you cry
• 0:43
  like right off the bat
• 0:44
  but um
• 0:46
  you guys ashley has been there for me from like
• 0:48
  day one as soon as she found me or i found her
• 0:51
  on social media she has made herself more available
• 0:54
  than i feel like any patient should ever have
• 0:56
  to make themselves available
• 0:57
  while dealing with what she has dealt with personally
• 1:00
  but she has such a huge heart
• 1:02
  and i think that it's because of that huge heart
• 1:05
  that she is where she is today
• 1:07
  and we're going to talk about some of the aid
• 1:09
  that you guys can get as patients
• 1:11
  if you are in need of travel assistance
• 1:13
  ashley has one of the organizations
• 1:15
  that specifically focuses on travel aid
• 1:17
  so ashley
• 1:18
  do you want to tell us a little bit about Eye On Grace
• 1:19
  and what do you guys do what's your mission
• 1:21
  absolutely thanks for letting me do that
• 1:23
  so the Eye On Grace foundation was started in may of
• 1:26
  twenty twenty four um
• 1:28
  specifically to help people with ocular melanoma
• 1:30
  travel for treatment um
• 1:32
  we think it's extremely important for you to have a
• 1:35
  a companion with you
• 1:36
  whether it's a caregiver or a friend
• 1:38
  and always good to have a second set of ears
• 1:41
  so our foundation decided in the beginning
• 1:43
  that we would not only sponsor a patient to travel
• 1:46
  but also um an additional person to go with them
• 1:49
  and just i i thought just out of the gate
• 1:51
  we would give the very specifics to it
• 1:53
  we
• 1:53
  we sponsor up to a thousand dollars per person per trip
• 1:56
  so to make that easier to understand
• 1:58
  if there's two people
• 1:59
  we can sponsor up to two thousand dollars per trip
• 2:02
  um it's anything travel related that is like um flights
• 2:07
  gas um
• 2:08
  ubers parking uh
• 2:10
  toll bridges um
• 2:11
  hotels things of that nature
• 2:14
  um we are going back to a
• 2:17
  hopefully a per diem for food starting january first
• 2:20
  where it'll be a twenty dollar per meal type of thing
• 2:23
  but right now it's just for travel
• 2:25
  and um
• 2:26
  we have up in i guess in twenty twenty five
• 2:29
  it's been an exceptional year
• 2:31
  exceedingly abundantly
• 2:32
  more than we thought we would be doing
• 2:34
  our goal was to do five hundred trips for the year
• 2:36
  and as of yesterday
• 2:37
  we've done six hundred and thirty trips
• 2:40
  um this year (2025)
• 2:42
  over three hundred and twenty five thousand dollars
• 2:44
  worth of travel grants that been
• 2:45
  have been awarded and um
• 2:48
  and we're we have just a ton of support
• 2:50
  in the ocular melanoma community
• 2:52
  because most of how we get to do this is um
• 2:55
  private donations
• 2:56
  or donations from pharma and medical device companies
• 3:00
  so very excited about that
• 3:02
  ashley you're a patient yourself
• 3:04
  and you as far as i know um
• 3:05
  the long as long as i have known you
• 3:07
  which has basically been
• 3:08
  the entirety of your metastatic journey
• 3:11
  you've been traveling uh
• 3:12
  i think from where you live in the auburn area
• 3:16
  auburn area uh huh
• 3:17
  auburn alabama
• 3:18
  in auburn alabama
• 3:19
  you've been traveling from auburn
• 3:20
  alabama to philadelphia or potentially i i
• 3:24
  have you ever gone anywhere other than philly
• 3:25
  for the moment just yeah
• 3:27
  so it's just been from auburn to
• 3:29
  to philly and i say just because we
• 3:31
  we know like on a map
• 3:32
  that's actually quite a distance
• 3:35
  but you do that
• 3:36
  or you have done that almost every week
• 3:38
  for a very long time correct
• 3:40
  a long time so um
• 3:42
  a couple of things i like to share about my story
• 3:44
  that i think would be interesting for people to hear is
• 3:47
  um i was diagnosed in two thousand twelve
• 3:49
  and um i was class two prame positive
• 3:53
  um HLA positive
• 3:54
  and for those of you in the ocular melanoma world
• 3:57
  you know those
• 3:58
  those prognostic indicators would typically say
• 4:01
  that my cancer could come back within five years
• 4:03
  but i was extremely fortunate
• 4:05
  that i went eight years without metastatic disease
• 4:08
  and the reason i wanted to even bring that up
• 4:09
  is because there's a
• 4:10
  potentially another resource available
• 4:13
  which is even
• 4:14
  how is the catalyst of how Eye On Grace got started
• 4:17
  so on my eighth year when i was working full time
• 4:20
  we had a um
• 4:21
  aflac group come to our office
• 4:23
  and share their products with us
• 4:25
  interestingly
• 4:26
  i did not think i would qualify for a cancer plan
• 4:28
  through aflac um
• 4:30
  i had
• 4:30
  i waited and i asked the person that was in charge um
• 4:34
  what do you have to do to qualify
• 4:36
  because i had cancer eight years ago
• 4:37
  and she said actually
• 4:38
  in the state of alabama um
• 4:40
  if you've been longer than five years
• 4:42
  without metastatic disease
• 4:44
  then you could qualify for this cancer indemnity plan
• 4:47
  the reason i mentioned that is
• 4:49
  that plan is forty five dollars a month
• 4:51
  and so i i signed up for it literally that day
• 4:53
  didn't even talk to my husband about it
• 4:55
  which is extremely unusual
• 4:56
  i'm it's not like me at all
• 4:58
  i had to go thirty days without a cancer diagnosis
• 5:00
  for it to be active so i i signed up
• 5:03
  paid my first premium august first
• 5:05
  i had my scans september twenty ninth
• 5:07
  so almost you know
• 5:08
  two months later and then learned october first
• 5:11
  that the cancer had spread
• 5:13
  um when that happened
• 5:14
  and we knew we were gonna go to philadelphia
• 5:15
  we looked at the cancer plan
• 5:17
  not even knowing Danet what it covered
• 5:19
  and we learned that um
• 5:20
  that it really does
• 5:21
  and they like the terminology bridge the gap
• 5:24
  and i do like that so
• 5:25
  aflac will bridge the gap
• 5:27
  for where insurance drops off
• 5:29
  and for me that was
• 5:30
  it would cover for two people to travel and our hotel
• 5:34
  and it was enough money sometimes to leftover for food
• 5:38
  then when i got on a clinical trial
• 5:40
  the trial will pay for some of your
• 5:42
  you know travel
• 5:43
  but it doesn't pay for a person to go with you
• 5:45
  so where aflac bridge the gap for me is where the
• 5:48
  the clinical trial dropped off
• 5:50
  and what it could pay for
• 5:51
  aflac was able to cover for somebody to go with me
• 5:54
  each time and um
• 5:55
  they were just anyway
• 5:56
  it's been over four hundred thousand dollars
• 5:58
  that i've been paid out from aflac
• 6:00
  for travel and cancer expenses
• 6:03
  so i i kind of do a commercial for
• 6:05
  not just them but if there are other um
• 6:08
  plans that are out there wherever you live
• 6:09
  it's different for every state
• 6:11
  so there's a part of me that i want to say
• 6:13
  if you're diagnosed with this cancer
• 6:14
  and you go a period of time um
• 6:17
  you know being NED
• 6:18
  no evidence of disease with your scans
• 6:20
  i say look into it
• 6:21
  because if you think it might come back
• 6:24
  it would be beneficial okay
• 6:26
  so that's that's how this got started
• 6:27
  so i had this plan i was traveling to philadelphia
• 6:30
  i got to meet other people like you
• 6:32
  you know like you
• 6:33
  and i've met in philly and i've met other people
• 6:36
  and sometimes the doctors would even say
• 6:38
  would you and dave meet with this family or this couple
• 6:40
  and so we had done that over the years
• 6:42
  and we've met several that um
• 6:45
  were having gofundme accounts that were exhausted
• 6:47
  people who have refinanced their house
• 6:50
  a family who the husband was a fireman
• 6:52
  that they're collecting money at the stop signs
• 6:54
  and all this stuff and um
• 6:56
  and it just broke my heart
• 6:57
  because so many of them were financially devastated
• 6:59
  from trying to travel for treatment
• 7:01
  even some making the decision of
• 7:04
  we're not gonna travel because we can't afford that
• 7:06
  we can't afford to put our family through that
• 7:08
  and it impacted their their treatment decision
• 7:11
  so in may of twenty twenty four um
• 7:13
  we decided to to put this foundation together
• 7:15
  i was selling some artwork then um
• 7:18
  which kind of um
• 7:20
  i guess was what we we used to
• 7:23
  to fund the treatment i mean
• 7:24
  the travel
• 7:24
  at first we thought we would do two or three a month
• 7:27
  and now it's like twenty a
• 7:29
  twenty a month haha
• 7:30
  so the artwork is not what
• 7:32
  what really supports the foundation now
• 7:34
  even though it is a small component of it
• 7:36
  but that's really how it got started
• 7:37
  and i wanted people to know those two factors
• 7:39
  one
• 7:40
  that you might actually have something offered to you
• 7:42
  through your work um
• 7:43
  that i think would be worth looking into
• 7:45
  um i got other supplemental insurance today
• 7:48
  that i think is important that people don't know about
• 7:50
  like critical illness um
• 7:51
  which paid me fifty thousand dollars on my um
• 7:54
  initial diagnosis
• 7:55
  that's a supplemental thing that you can just
• 7:57
  when you sign up for your benefits
• 7:59
  and i got hospital indemnity
• 8:01
  and so whenever and again
• 8:02
  that's supplemental um
• 8:03
  that was not through aflac
• 8:04
  that was through my work but those
• 8:06
  those three things those components
• 8:07
  are something that i wish more people in our
• 8:09
  our community knew to even look for
• 8:13
  that were beneficial
• 8:14
  when i was diagnosed with metastatic disease
• 8:17
  well this is
• 8:17
  i mean this is news to me
• 8:19
  um i'm three years into a metastatic diagnosis
• 8:21
  and so
• 8:22
  i have no idea if any of this would be beneficial
• 8:24
  going into like
• 8:26
  the new year for me for insurance
• 8:28
  but i love what you say about how some of these
• 8:31
  these avenues of support can be a way that the
• 8:34
  that the gap is bridged and that is
• 8:36
  that's such a good way to put it because
• 8:38
  because it can be really devastating to patients
• 8:41
  to find out that oh
• 8:43
  my health insurance will cover my treatment
• 8:44
  but they won't help me
• 8:46
  get to where i need to get that treatment
• 8:48
  and to to find these
• 8:49
  these avenues of extra support that already exist
• 8:52
  and to just um
• 8:54
  implement them so let me just
• 8:55
  just to rephrase you said there was critical
• 8:57
  critical illness part of your insurance
• 9:00
  and that's your health insurance through your work
• 9:02
  right that was
• 9:02
  that was through health insurance at work
• 9:04
  and then what was the other part of it
• 9:06
  it's called hospital indemnity
• 9:07
  and that usually pays around fifteen hundred dollars
• 9:10
  per night
• 9:11
  anytime you are in the hospital for any type of
• 9:13
  of out patient or inpatient stay overnight
• 9:17
  it'll pay you fifteen hundred dollars
• 9:18
  no usually most plans do
• 9:19
  but again so is it
• 9:20
  is it paying toward the like
• 9:22
  toward the total hospital bill
• 9:24
  or is it paying you and your family
• 9:25
  like up to fifteen hundred to help with gas
• 9:28
  to help with the food the cost of child care
• 9:30
  for example I think hospital indemnity
• 9:34
  i think that is really more like
• 9:35
  to help you pay for whatever bills
• 9:37
  yeah i don't even know
• 9:38
  but they give it to you directly
• 9:40
  you can use it for whatever
• 9:42
  like my situation i don't
• 9:44
  i don't work
• 9:46
  i i work with A Cure In Sight
• 9:47
  but i don't work in such a way that my income
• 9:50
  is providing everything however
• 9:52
  my main caregiver is my husband
• 9:53
  and he is the main provider of our home
• 9:55
  and so when he has to take off two three
• 10:00
  i think every single Hepzato procedure that i've had
• 10:02
  to this point um
• 10:04
  we've now had we've now had three of those
• 10:06
  and every single time he's taken off the day of
• 10:10
  the day before the day after
• 10:12
  and the next day so
• 10:12
  he's taken off almost a full week of work
• 10:15
  every single time and it's great if he has pto
• 10:17
  but i mean
• 10:19
  frankly the
• 10:21
  the way that i look at this
• 10:22
  it's not fair right
• 10:23
  it's not fair for him to have to take pto
• 10:25
  and for us to then feel like we are limited
• 10:28
  and restricted as a family
• 10:29
  to what we can do as far as like
• 10:31
  vacation time
• 10:32
  and just go have fun as a family and make memories
• 10:34
  so
• 10:35
  this is absolutely something that i'm gonna look into
• 10:37
  i have no idea if it will be beneficial for me
• 10:39
  in the moment
• 10:39
  but i really hope those of you guys listening
• 10:41
  especially if you are at the point that ashley noted
• 10:44
  right if you are new to this diagnosis
• 10:47
  your eye was treated and
• 10:48
  especially
• 10:49
  if you're in one of those higher risk classifications
• 10:51
  so if you've been told hey
• 10:53
  you've got a pretty high risk of
• 10:54
  of this metastasizing you're having scans
• 10:57
  i don't know ashley
• 10:57
  what do you think every three to six months
• 10:59
  like at a minimum
• 11:01
  you people you guys in that community
• 11:03
  you guys should be looking into these kinds of things
• 11:06
  and if you can't do it alone
• 11:07
  then find the support that you can to
• 11:09
  you know from your doctor's office
• 11:10
  there's social work support
• 11:11
  there are resources out there
• 11:13
  and i feel like we
• 11:14
  because i don't know ashley
• 11:16
  maybe you maybe you've seen this
• 11:17
  but i feel like sometimes
• 11:18
  because we are told oh
• 11:19
  you're such a rare diagnosis
• 11:21
  that we get it in our heads
• 11:22
  that the american cancer society
• 11:25
  and that some of these larger organizations
• 11:26
  or
• 11:27
  just larger things that apply to other cancer patients
• 11:29
  somehow don't apply to us
• 11:30
  and i think it's so important to recognize they do
• 11:33
  they still do apply critical illness
• 11:36
  that applies to a stage four cancer patient
• 11:38
  across the board
• 11:38
  doesn't matter what kind of cancer you have
• 11:41
  so okay
• 11:42
  critical illness
• 11:43
  critical illness benefits
• 11:45
  and then hospital indemnity
• 11:46
  and then what was the the part that you enacted um
• 11:49
  before you were before you were diagnosed with mets
• 11:52
  that was the aflac plan what was that called
• 11:54
  so well
• 11:54
  the the aflac plan is called a cancer indemnity plan
• 11:57
  and aflac is not the only
• 11:59
  you know that's supplemental
• 12:00
  and a lot of times those type of plans are offered
• 12:03
  like
• 12:03
  if your business or company brings another company in
• 12:07
  like aflac so that's separate
• 12:09
  where the things we you and i were just talking about
• 12:11
  when you go to sign up for your benefits every year
• 12:14
  there's gonna be supplemental things under there
• 12:16
  long term disability short term disability
• 12:18
  the critical illness
• 12:19
  i'm just writing these down so you guys are listening
• 12:22
  write this down now do it with me
• 12:24
  yeah ok
• 12:25
  and again i didn't know
• 12:27
  yeah and this is something
• 12:28
  if there are people who are listening
• 12:29
  that there are two of you that are income
• 12:32
  that you provide income for your family
• 12:33
  where i was working full time
• 12:35
  dave was working full time
• 12:36
  dave got the same thing on his plans
• 12:39
  for example critical illness um on
• 12:42
  on his supplemental plan he had a twenty
• 12:45
  i think or twenty five thousand dollar for me
• 12:48
  if i ever had anything happen
• 12:49
  so when we
• 12:49
  when i was initially diagnosed with metastatic disease
• 12:52
  we got a check from my company
• 12:54
  and a check from his company
• 12:55
  that was just out of the gate
• 12:57
  here's seventy five thousand dollars
• 12:58
  to be able to put toward we paid off debt
• 13:01
  we paid off things so that if i ever didn't work
• 13:04
  we would you know
• 13:05
  we would have we would have paid things off
• 13:08
  and it was not something i was aware of
• 13:10
  that you could sign up for
• 13:11
  and it's usually not very expensive
• 13:13
  and people don't know what it is
• 13:14
  and so when you're young like you are
• 13:16
  and young like i was forty two when i was diagnosed
• 13:18
  why would i sign up for something
• 13:20
  that seemed like more for older people
• 13:22
  but i'm really i'm really glad we did
• 13:24
  and i wish more people knew about it
• 13:25
  because it's such a small monthly payment
• 13:28
  for something that paid out really big in my life
• 13:31
  so those are again
• 13:32
  those are part of your benefits plan
• 13:34
  and typically
• 13:34
  are just supplemental on your benefits plan
• 13:36
  and then
• 13:36
  the aflac cancer indemnity plan was totally separate
• 13:39
  yeah i've traveled to philadelphia
• 13:41
  over two hundred and thirty times
• 13:43
  and the fact that that aflac has paid for um
• 13:46
  every single trip every time i've done um
• 13:49
  that's incredible and another thing about
• 13:51
  i will tell you about the cancer indemnity plan is um
• 13:54
  they will pay you for other things
• 13:56
  for example if i get nausea medicine
• 13:58
  a hundred and fifty dollars for nausea medicine
• 14:00
  the fact that i was on a clinical trial
• 14:02
  i got two thousand dollars a month
• 14:04
  just for being on a trial
• 14:05
  to say i know that that's hard and i don't know what
• 14:08
  and even now
• 14:09
  i get two thousand dollars a month just for being on um
• 14:12
  Kimmtrak and i'm not traveling
• 14:14
  you know i'm just here in town
• 14:15
  but so the cancer indemnity plan has been um
• 14:18
  like i said really really
• 14:20
  really an an amazing thing for our family
• 14:23
  that being said um
• 14:24
  that is why we started because i
• 14:26
  i just knew that we wanted to be able to pay it forward
• 14:29
  not everybody has had the opportunity
• 14:31
  cause unfortunately sometimes
• 14:32
  you can't qualify for it
• 14:33
  if you've been diagnosed with cancer
• 14:35
  so yeah
• 14:36
  you have to go a period of time either cancer free
• 14:38
  or try to get this before diagnosed with cancer
• 14:40
  like if there's anybody with a freckle out there
• 14:42
  that thinks they might get an ocular
• 14:44
  melanoma diagnosis go ahead and
• 14:46
  and get a cancer plan absolutely yeah
• 14:49
  but like you said you
• 14:50
  you went a period of time cancer free
• 14:53
  as in like
• 14:54
  your eye was treated you had your eye enucleated
• 14:56
  and then you were considered cancer free
• 14:57
  until such point that you did metastasize
• 15:00
  right so
• 15:00
  that was the point
• 15:01
  that you qualified for this aflac plan
• 15:03
  so that's right even if it doesn't apply to everyone
• 15:05
  like it sounds like
• 15:06
  it would at least be worth looking into applying for
• 15:09
  and and if all the qualification is is oh
• 15:12
  you have to stay cancer free for two months
• 15:14
  or six months or
• 15:16
  you know whatever it is
• 15:18
  well i mean
• 15:18
  why not
• 15:19
  this sounds like it would be life changing
• 15:21
  for patients in this kind of position
• 15:23
  who are higher risk and
• 15:26
  and to your point
• 15:27
  this sounds like the kind of thing that would make it
• 15:29
  so that Eye On Grace
• 15:30
  can go to the people who need it the absolute most
• 15:33
  who are in in a situation
• 15:35
  where they're two years into metastatic disease
• 15:37
  or they apply for something like this
• 15:39
  and they don't qualify that because we
• 15:41
  i mean obviously you
• 15:42
  and that's why we're here
• 15:43
  we recognize there are people
• 15:44
  who won't qualify for these kinds of things
• 15:47
  or don't have the insurance benefits
• 15:49
  or they're already retired and like
• 15:50
  they're just living off of retirement
• 15:52
  like there's so many scenarios here
• 15:55
  that Eye On Grace exists to help
• 15:56
  to offset
• 15:57
  and just to bridge the gap between what you have
• 16:00
  and what you don't
• 16:01
  yes speaking of that um
• 16:03
  i would love to be able to
• 16:04
  you know kind of address who does qualify for this
• 16:06
  and um because there are other resources out there
• 16:09
  that Danet and i are gonna talk about in just a minute
• 16:11
  but with our organization um
• 16:13
  i don't know this is just how i felt about it
• 16:15
  when you run your own foundation
• 16:16
  you get to make up your own rules
• 16:17
  and as long as your board approves them
• 16:20
  the way that we started is
• 16:21
  we said none of us planned on having ocular melanoma
• 16:23
  we didn't plan on it from an emotional physical
• 16:26
  you know health position
• 16:27
  and we definitely didn't plan on it from a financial
• 16:30
  and even if um even if i
• 16:34
  you know some some people
• 16:35
  in order to qualify for travel grants
• 16:37
  you have to prove hardship
• 16:38
  or you have to prove that you make
• 16:39
  less than eighty five thousand dollars a year
• 16:41
  or something like that and i
• 16:43
  i can under
• 16:44
  totally understand why those rules are set in place
• 16:47
  but with Eye On Grace Foundation
• 16:48
  we don't look at any finances
• 16:51
  we just think
• 16:51
  the fact that you were diagnosed with ocular melanoma
• 16:54
  is is crappy enough
• 16:57
  and that we would like to be able to support those
• 17:00
  we ask people to consider the fact that that um
• 17:04
  that we aren't looking at your finances
• 17:05
  and so if you could you know
• 17:07
  obviously ask for the things that you need
• 17:10
  and not necessarily excess
• 17:12
  so when but i will tell you that
• 17:14
  as long as you have a diagnosis of ocular melanoma
• 17:16
  that we can verify meaning that you send us a um
• 17:20
  a a doctor's report
• 17:22
  an mri a castle diagnostic test
• 17:24
  something like that um
• 17:26
  we have an a foundation website
• 17:28
  it's EyeOnGraceFoundation.org
• 17:31
  that there is a travel grant application
• 17:33
  it's one page and on that
• 17:35
  at the end of that page you have to submit that you um
• 17:38
  whatever your proof of of diagnosis is
• 17:41
  then you're immediately approved
• 17:42
  and i have an administrator
• 17:43
  Dana Hay that she um
• 17:45
  we'll send you an email
• 17:46
  to tell you what you need to do next
• 17:48
  and basically um
• 17:50
  once you travel we uh
• 17:52
  you submit your travel reimbursements now
• 17:54
  on our website and upload any um
• 17:57
  receipts that you have
• 17:58
  so if it's a receipt for your flight
• 17:59
  or receipt for your parking
• 18:01
  or again the toll or your uber or whatever um
• 18:04
  and then we pay people back with venmo paypal
• 18:07
  or a check we try to do it
• 18:09
  we love venmo and paypal
• 18:11
  because you get it in real time
• 18:13
  checks are fine but i
• 18:14
  you know
• 18:14
  you never know when you're gonna get them in the mail
• 18:16
  but so that's how we pay people back
• 18:18
  we usually pay back within two to three days
• 18:20
  if not the day of your submission
• 18:23
  so it's actually a really
• 18:24
  really fast
• 18:25
  and it's not hard the learning curve is not hard at all
• 18:28
  the other thing we want people to know is
• 18:30
  sometimes you can't afford your flight
• 18:32
  yeah like
• 18:33
  sometimes you don't have a credit card that covers it
• 18:34
  what do you do for people who say
• 18:36
  don't have a credit card they can put it on
• 18:38
  and they literally don't have the money in the bank
• 18:39
  for a flight
• 18:40
  a flight across country
• 18:41
  could be almost a thousand dollars a person
• 18:43
  it just depends on where you're flying from
• 18:44
  the airports the airline
• 18:46
  all of it
• 18:47
  and not everybody's gonna have that on hand immediately
• 18:49
  and not everyone is gonna be
• 18:51
  you know able to qualify for a credit card
• 18:53
  that would allow them to just put it off for a bit
• 18:56
  so we have those people yeah
• 18:58
  they they call us um
• 18:59
  and they send us they'll submit
• 19:02
  here's the flight arrangements that we want
• 19:03
  and we just pay for it
• 19:05
  we've only had one time in the three hundred
• 19:07
  and whatever trips
• 19:08
  that that person was not able to take the trip
• 19:10
  but we do do the insurance
• 19:12
  and we were just able to cancel it on our own card and
• 19:15
  um and it was totally fine
• 19:17
  the other thing we do that we prefer to do is
• 19:19
  let's say you're going to philadelphia
• 19:21
  and you're staying at a hotel
• 19:23
  we have relationships with four different well
• 19:26
  it really any any place you want to stay
• 19:28
  but we have a current relationship
• 19:29
  with four different places in philly
• 19:31
  that our card is on file
• 19:32
  that literally we just send them an email that says
• 19:35
  we're gonna make a reservation for Danet Peterson
• 19:37
  she'll be checking in on this day and on that day
• 19:39
  and charge our card and they do it
• 19:41
  so as long as we know when you're going
• 19:43
  we can we can do that
• 19:45
  we try not to be the um
• 19:46
  the travel agent and so
• 19:48
  our relationship in philly is
• 19:50
  different than other places
• 19:50
  but
• 19:51
  let's say that you were going to california for a trip
• 19:54
  and you wanted to make a hotel reservation
• 19:56
  you would make it send me the confirmation
• 19:59
  i would call that hotel and put our card on file
• 20:02
  okay just to make your life easier
• 20:04
  then you don't even have to get the hotel reimbursed
• 20:06
  it just gets billed directly
• 20:08
  yeah yep
• 20:09
  and um
• 20:09
  and if you're going to philadelphia
• 20:11
  we have uber drivers that contract with us
• 20:13
  that you don't have to we give them your names
• 20:16
  you can call them and then they bill us
• 20:18
  and you don't even have to pay that bill
• 20:20
  so sometimes
• 20:21
  people can get off
• 20:21
  without having anything come out of their pocket
• 20:24
  that they have to be reimbursed for
• 20:25
  that we cover just out of the gate
• 20:27
  yeah i think that's so incredible
• 20:29
  that you guys have been able to network in such a way
• 20:32
  and and i think just knowing who you are
• 20:35
  ashley
• 20:35
  and knowing how much you value connecting with people
• 20:38
  i can understand like
• 20:39
  because i remember seeing your posts
• 20:41
  like
• 20:41
  whenever you would travel to philly on a weekly basis
• 20:43
  and i remember seeing your posts
• 20:45
  of all the people that you met
• 20:46
  and they weren't just ocular melanoma patients
• 20:48
  you met random strangers that you just connected with
• 20:51
  and i love sorry
• 20:53
  i love seeing that you've been able to take all these
• 20:56
  incredible connections that you've made
• 20:59
  and you've turned them into something
• 21:01
  that actually serves not just yourself
• 21:03
  but other people
• 21:04
  and i think that that is a gift that you have
• 21:07
  to observe that
• 21:08
  and to notice something about someone else
• 21:10
  and a way that this person could be of service to
• 21:13
  not just you but to other people
• 21:15
  and to then you know
• 21:16
  to then put that out in the world and say hey
• 21:18
  i really i want you to be our go to
• 21:20
  you know three uber drivers in the philly area
• 21:23
  and to have the relationship with them already
• 21:25
  or to you know
• 21:25
  have established it through other patients
• 21:27
  like however the connections came about
• 21:29
  i think it speaks volumes
• 21:31
  to the kind of person that you are
• 21:32
  that you're able to build those connections
• 21:34
  that's really been a special thing too
• 21:36
  because sometimes you know
• 21:37
  i don't get to meet our travel
• 21:38
  we call them travel grant recipients
• 21:40
  i don't get to meet them face to face
• 21:42
  and i'll go to philly and i'll see my uber drivers
• 21:44
  and they're like oh
• 21:45
  i saw you know
• 21:46
  mary smith last week
• 21:47
  and she looks like she's doing so much better
• 21:50
  and i'm like i've never seen mary smith
• 21:51
  and that's really cool that you have a
• 21:53
  a friendship with her and um
• 21:55
  we had a patient that passed away recently that uh
• 21:58
  that the uber driver was the last person he spoke to
• 22:02
  and um he literally
• 22:04
  at two o'clock in the morning
• 22:05
  knew that he would be out driving
• 22:06
  and he texted them and they had this conversation
• 22:09
  and then our sweet little friend passed away at like
• 22:11
  two thirty
• 22:12
  and his last conversation was with the uber driver
• 22:15
  so they're really special people
• 22:16
  i know it's kind of a crazy thing
• 22:18
  um they're special people that we use there
• 22:20
  so uh
• 22:21
  there was another thing i was gonna tell you about um
• 22:24
  that there are other funds too
• 22:25
  like you you brought up a good point a minute ago
• 22:27
  that sometimes just the flight alone will exhaust
• 22:30
  the two thousand dollars that we give
• 22:32
  and so
• 22:32
  one of the things that we have found is that there's um
• 22:35
  we're gonna talk about some other organizations
• 22:37
  but i wanna talk about philadelphia in particular
• 22:40
  there's a gentleman
• 22:40
  and i asked his permission to be able to share his name
• 22:43
  his name is Ken Luker and Ken um
• 22:45
  has ocular melanoma he lives in california
• 22:47
  and he's been undergoing all kinds of treatments
• 22:49
  but he set up a Ken Luker
• 22:52
  i guess fund
• 22:53
  that's what it's called in philadelphia
• 22:55
  that um
• 22:55
  is run by Molly Vocino Molly is the social worker there
• 22:59
  and i met her she's wonderful
• 23:01
  yeah she is great
• 23:01
  and so sometimes we will call
• 23:03
  like this happened just yesterday
• 23:05
  where the person's um
• 23:07
  their their flight was about nineteen hundred dollars
• 23:10
  and uh if they would
• 23:11
  if we would have paid for their hotel room
• 23:13
  it would have been over the two thousand dollars
• 23:15
  so i reached out to molly and said hey
• 23:17
  could you cover this person's hotel
• 23:19
  with the Ken Luker Fund and she said absolutely
• 23:22
  and she was able to do that
• 23:23
  so anybody can qualify for the Ken Luker Fund
• 23:26
  i can't believe i'm saying this um
• 23:28
  in philadelphia you just have to ask
• 23:30
  philly cannot um
• 23:32
  promote it
• 23:33
  is this fund strictly for ocular melanoma patients um
• 23:36
  or only ocular melanoma because to your point
• 23:40
  you know as far as other
• 23:41
  other hospitals avenues of financial aid
• 23:44
  it's always worth asking
• 23:46
  if you're traveling to a center
• 23:47
  and even if you're local
• 23:48
  and you're going to a medical center regularly
• 23:51
  it is always worth asking
• 23:52
  do they have any specific financial aid
• 23:54
  grants or sponsorship scholarships
• 23:57
  that they offer to patients like you
• 23:59
  and like what i discovered
• 24:00
  this was before the Ken Luker foundation existed
• 24:03
  and really before Eye On Grace existed
• 24:05
  i was traveling for a clinical trial that was adjuvant
• 24:08
  i had to travel to philadelphia from arizona
• 24:11
  it was kind of in the middle of the
• 24:12
  the adjustments post pandemic
• 24:14
  so there was a period
• 24:15
  when i was able to just get my medicine in the mail
• 24:17
  and then that you know
• 24:18
  all the the rules and legislation changed and said uh
• 24:21
  you have to travel now to go get your medicine
• 24:24
  so i had to travel at least every three months
• 24:26
  sometimes more frequently
• 24:27
  depending on that and i remember asking the hospital
• 24:30
  just like
• 24:30
  do you guys have anything that you can do to support me
• 24:33
  and the hospital in philly had a very specific fund
• 24:35
  that was a scholarship
• 24:37
  for a cancer patient who was under a certain age
• 24:39
  and that worked for me
• 24:40
  because i was under a certain age
• 24:42
  so you never know what's out there
• 24:44
  because sometimes people make donations to say
• 24:46
  the Sloan Kettering Memorial Center or
• 24:48
  or to the Honor Health Center
• 24:49
  or to somewhere in california
• 24:51
  i mean everywhere across the country
• 24:53
  i am positive that every major
• 24:54
  cancer center has scholarship programs
• 24:57
  that are made in memory of someone who passed away
• 25:00
  and that they have very specific
• 25:03
  kind of similar to what you're saying
• 25:04
  they can't the hospital can't promote it
• 25:05
  but you can ask about it and you can say hey i'm
• 25:08
  i'm forty
• 25:09
  i shouldn't even exist in the cancer community
• 25:12
  do you have any sponsorships or scholarships
• 25:14
  grants that i would qualify the
• 25:16
  the worst they're gonna say is at this time no
• 25:19
  we don't have anything right now
• 25:21
  the best they might say is yeah
• 25:22
  actually we do we
• 25:23
  we have something that is unique to patients like you
• 25:26
  or to i mean
• 25:27
  in my local area there's
• 25:29
  there's a company um
• 25:30
  a non profit called Happily Ever After League
• 25:33
  and they call themselves The Heal Foundation
• 25:35
  and they specifically service mothers with cancer
• 25:38
  and so mothers with young children um
• 25:41
  under a certain age
• 25:42
  and then i think the other part of it is The Bright
• 25:44
  i mean we've talked about The Bright Spot Network
• 25:46
  i mean there are so many places out there
• 25:49
  that do their best to serve a very niche community
• 25:52
  a very specific group of people
• 25:54
  regardless of if they have ocular melanoma
• 25:56
  now i'm
• 25:56
  i'm with you ashley
• 25:57
  of course if there's a
• 25:59
  a place that is specific to ocular melanoma
• 26:01
  where only om patients qualify
• 26:04
  that's gonna be one of the best avenues of help
• 26:06
  for patients but other avenues do exist
• 26:09
  and it's always worth asking and looking
• 26:11
  and just being aware that they could exist out there
• 26:13
  and if you look for them you might just find them
• 26:16
  and in fact i would argue you will find them
• 26:18
  you will you will
• 26:19
  matter of fact one of the things you mentioned
• 26:21
  i wanted to tell people why they can't um
• 26:24
  promote it is um
• 26:25
  it would be like what they call cherry picking
• 26:27
  which medicare doesn't allow you it
• 26:29
  it would be like saying hey
• 26:31
  come here we've got this special fund
• 26:32
  and so that's why you should come to our facility
• 26:34
  so they can't um
• 26:36
  it's not that they're being selfish
• 26:37
  and don't want to promote it
• 26:38
  or tell you about it it's
• 26:39
  they can't it's
• 26:39
  they would lose their medicare funding right
• 26:42
  but if you ask about it they can
• 26:43
  they can answer and i
• 26:44
  i guarantee you like you said
• 26:45
  that almost every center
• 26:47
  what we call like a center of excellence type of place
• 26:49
  will have these type of funds
• 26:51
  and the other thing people need to know is that that
• 26:53
  that it's very likely that either there's a
• 26:56
  a Hope Lodge or a Astrazeneca Lodge or a um
• 27:00
  so i mean
• 27:00
  even philly's got a lodge
• 27:02
  it's not close haha
• 27:03
  it's not at all close to the hospital
• 27:05
  but there are opportunities like that
• 27:07
  at a lot of the major places
• 27:09
  MSK and you know
• 27:10
  Mayo Clinic and things like that
• 27:11
  absolutely yeah
• 27:13
  and that's something else that we can touch on
• 27:15
  and i was really hoping
• 27:16
  that we were gonna be able to have
• 27:17
  somebody from this organization on um
• 27:19
  they are listed on A Cure In Sight's website
• 27:21
  i believe both of these organizations are listed as
• 27:23
  just avenues that you might find extra support for
• 27:26
  specifically for travel and um
• 27:29
  i've utilized Hosts for Hospitals
• 27:31
  and we're gonna put these in the show notes
• 27:32
  Hosts for Hospitals
• 27:34
  i think is really pretty specific to the philly area
• 27:36
  but i could be wrong
• 27:37
  and they have been i mean
• 27:39
  a delight to work with
• 27:41
  and every time that i ever stayed with someone
• 27:43
  i've actually i've stayed at a hotel
• 27:45
  that was sponsored by Host for Hospitals
• 27:47
  i've stayed in a condominium
• 27:49
  and this was in the philly area
• 27:51
  but it's it's worth asking
• 27:53
  you know does Host for Hospitals know of like
• 27:55
  especially if you're someone like me
• 27:56
  who doesn't want to travel to philly
• 27:58
  like frankly
• 27:59
  i don't i don't want that in my life
• 28:01
  i have three little kids i don't want to have to travel
• 28:04
  and i've done enough in the om world um
• 28:07
  just in my profession
• 28:08
  to know that there are centers of excellence
• 28:10
  that treat uveal melanoma
• 28:11
  and treat it well that are all over the country
• 28:14
  and i i know we like
• 28:15
  we talk about philly right now
• 28:16
  because that's where you've gone the most right
• 28:18
  and it's i
• 28:18
  i don't want this to to sound at all in our like
• 28:22
  in our conversation
• 28:23
  i don't want this to sound like we're saying
• 28:24
  you should only go to philadelphia
• 28:26
  ashley's Eye On Grace Foundation
• 28:28
  she will sponsor for you
• 28:30
  to go anywhere that you are seeking medical treatment
• 28:33
  i mean within reason
• 28:34
  i think um yeah
• 28:36
  but to your point i hate to interrupt you
• 28:38
  but i want people to know that this is like even
• 28:41
  even if you're having plaque therapy
• 28:43
  i mean that could be
• 28:44
  you know just two hours away from your house
• 28:46
  we will cover the gas and yeah
• 28:47
  get the gas get the gas card exactly
• 28:50
  we will cover um
• 28:51
  you know we have people in canada
• 28:52
  we have people um
• 28:54
  you know i
• 28:55
  matter of fact just yesterday
• 28:56
  i asked Dana to look at the number of places
• 28:59
  that we have sponsored people to go and um
• 29:02
  and it's it's everywhere
• 29:03
  it from california to michigan to MD Anderson
• 29:07
  you know texas
• 29:08
  multiple places in florida um
• 29:10
  of course MSK and um
• 29:12
  and even two places in Canada
• 29:15
  like
• 29:15
  we have people in Canada that go to Princess Margaret
• 29:18
  or go wherever um
• 29:20
  we have people in Canada that were flying to florida
• 29:24
  for Hepzato yeah
• 29:25
  for treatment you know yeah
• 29:26
  it's just i want people to know it's kind of everywhere
• 29:28
  does Eye On grace help with international patients
• 29:32
  we do we we
• 29:33
  we have gosh
• 29:34
  um i'm trying to think it's like
• 29:36
  six or eight people that we sponsored in
• 29:38
  in Canada specifically
• 29:40
  and those are so they seem pretty easy to me there
• 29:43
  it's train rides it's
• 29:44
  you know that kind of thing
• 29:46
  of flights whatever
• 29:48
  from Japan
• 29:50
  and our sweet friend that lives in Norway
• 29:52
  every time she takes a trip
• 29:53
  and i know you know who i'm talking about
• 29:55
  our friend in Norway whenever she goes anywhere
• 29:58
  um yeah
• 29:59
  we we sponsor her trips as well
• 30:00
  okay and two
• 30:01
  and i guess i would like for people to know
• 30:03
  you can get up to um
• 30:04
  ten thousand dollars per person per year
• 30:07
  and then it starts over and so
• 30:10
  because we know that's the other thing
• 30:11
  is that unfortunately
• 30:12
  like some people will ask me
• 30:13
  and i'm sure you've been asked
• 30:14
  so how many more treatments do you have
• 30:17
  i don't know exactly in our world
• 30:19
  it'd be great if i knew i wish i knew
• 30:21
  yeah i wish it was like hey
• 30:22
  you get five radiation treatments and you're done
• 30:24
  or six chemo treatments and you're done
• 30:25
  but no
• 30:26
  you're on these treatments for sometimes indefinitely
• 30:29
  i mean you were on Kimmtrak for years right
• 30:31
  you were on a Kimmtrak and a
• 30:32
  a prame trial um
• 30:34
  i can't remember the name of it
• 30:35
  but you were on two different drugs
• 30:36
  and you went every week for multiple years
• 30:39
  i want to say it was over three years that i remember
• 30:41
  yeah four
• 30:42
  right at four years and
• 30:43
  and even with that i don't
• 30:44
  i don't mean to get caught up in the weeds
• 30:46
  but since you brought up a trial
• 30:48
  we have people who were like on the IDE
• 30:49
  196 trial we have people on prame Tebby trial
• 30:52
  that their sponsor will pay for most of their travel
• 30:56
  but it's not all
• 30:58
  and so again
• 30:58
  what they do is they'll submit an application to us
• 31:00
  and they'll say this is what Ideaya paid us back
• 31:03
  we have a gap of three hundred dollars
• 31:06
  and we will pay the difference
• 31:09
  we will pay between what Ideaya paid
• 31:10
  and what they paid out of pocket
• 31:12
  we will pay the difference
• 31:13
  and then the other really cool thing is
• 31:15
  we want people to be on clinical trials
• 31:18
  you and i both want people to be on trials
• 31:20
  because when they're on trials
• 31:21
  then we learn and we're able to pass on
• 31:23
  okay so
• 31:24
  there are some clinical trials right now
• 31:25
  in the united states
• 31:26
  that are not providing travel for their trial
• 31:29
  and we are bridging that gap
• 31:32
  we they know about us
• 31:33
  we have the people Quisinostat
• 31:34
  i can't say it Quisinostat
• 31:37
  whatever it is anyway
• 31:39
  that's in miami like multiple
• 31:41
  a dozen people that were sponsored question yes
• 31:45
  okay okay
• 31:45
  do you know about do you know about the compass trial
• 31:49
  i do not ok
• 31:50
  so the compass trial is for
• 31:53
  it's for early treatment like of ocular melanoma
• 31:56
  for very small lesions and the way that
• 31:58
  and nobody quote me
• 31:59
  i could be i could be slightly incorrect
• 32:01
  but i'm fairly certain that once you're on the trial
• 32:05
  this compass trial will
• 32:07
  they will cover your travel to go
• 32:09
  you know
• 32:09
  however many times you need to go for this treatment
• 32:11
  it's a it's a very unique type of treatment
• 32:13
  it's not it's not laser um
• 32:16
  it uses a laser
• 32:17
  but it's an injection that then is activated by a laser
• 32:19
  and it preserves the healthy vision of the eye
• 32:21
  as much as possible and it's a really
• 32:23
  really amazing thing
• 32:25
  but they don't cover the travel for someone to say
• 32:27
  go from i don't know
• 32:29
  arizona to idaho
• 32:30
  if that's where the treatment is happening
• 32:32
  and i need to go be evaluated and find out
• 32:34
  do i
• 32:35
  as a patient with this tiny tumor that needs treated
• 32:38
  do i qualify for that trial
• 32:39
  so this would be a really really honestly i'm
• 32:42
  i'm just using this as an example
• 32:44
  but
• 32:44
  this would be a really unique way to bridge that gap
• 32:46
  because then we don't have the excuse or the not
• 32:49
  i don't want to say excuse
• 32:50
  we don't have the reason to pull back from
• 32:52
  say enrolling in that trial
• 32:54
  because they're they're not gonna cover my treatment
• 32:57
  or they're only gonna cover my treatment travel
• 32:59
  they're not gonna cover my evaluation travel
• 33:01
  if you're going to be evaluated for a clinical trial
• 33:04
  that says we have to check a few things
• 33:06
  to see if you qualify to do this trial
• 33:08
  it sounds like
• 33:09
  you guys would be able to bridge that gap
• 33:11
  because it's treatment related travel
• 33:13
  and if you know
• 33:14
  sometimes that's happened with people who
• 33:15
  they have to go back for their scans
• 33:16
  so their scan travel is not covered
• 33:19
  which that makes no sense to me
• 33:20
  it doesn't make any sense
• 33:22
  you can't be on trial if you don't have regular scans
• 33:25
  like the things
• 33:26
  the arbitrary things that come up
• 33:27
  are such a nuisance for us
• 33:29
  as patients
• 33:30
  and you have such a unique perspective on that
• 33:33
  because you've been in the middle of it
• 33:35
  and while yes
• 33:35
  you've had the aflac plan
• 33:37
  you've had all of these other things
• 33:38
  that you were in a position
• 33:40
  and just learned enough about them
• 33:42
  soon enough to be able to implement them for yourself
• 33:44
  you also have dealt with so much personally
• 33:46
  and you have a really strong insight
• 33:49
  into the rest of the community
• 33:50
  because you connect so well and so easily
• 33:52
  with so many patients across the world
• 33:54
  seek your help seek your advice
• 33:56
  who just need somebody to talk to
• 33:58
  and you're just one human being
• 33:59
  i know how much you do and i know how
• 34:01
  how hard it is i mean
• 34:03
  i know how hard it is on me
• 34:04
  i can i can only imagine how hard it is on you
• 34:07
  like i just got back from the
• 34:08
  Eye Believe conference and i host that whole conference
• 34:10
  and i spend i mean
• 34:11
  you guys i spend the entire weekend
• 34:14
  basically all day thursday
• 34:15
  all day friday and all day saturday
• 34:18
  and i'm i mean
• 34:18
  i got cumulative less than ten hours of sleep
• 34:21
  between all three of those days
• 34:23
  because i was up i was up working so hard
• 34:25
  trying to make sure that everything went well
• 34:27
  and we care so much like when we are in this
• 34:30
  and we are part of an advocacy organization
• 34:32
  or we are
• 34:33
  like it like in ashley's case
• 34:35
  founding a foundation that is going to
• 34:38
  i mean it
• 34:38
  it's going to be immortalized
• 34:40
  it will it will never go away
• 34:41
  like this is the kind of foundation that will exist
• 34:43
  long after i mean
• 34:45
  long after you get to be ninety years old
• 34:47
  and pass away from something that is not ocular melanoma
• 34:51
  we're gonna put that out in the universe
• 34:53
  right right
• 34:54
  um and i
• 34:54
  i just think that it's so incredible
• 34:56
  for this to be a legacy that you're living and leaving
• 35:01
  wow i know
• 35:02
  we um
• 35:02
  is so humbling every day because i say
• 35:04
  you know we stand on thousands of shoulders y'all
• 35:07
  we get i mean
• 35:08
  for it to be mostly privately private donations
• 35:11
  like you you guys um
• 35:13
  that is how it's funded you know we'll we
• 35:16
  i get checks in the mail every day
• 35:18
  literally every day or you
• 35:19
  you know you could donate on our
• 35:21
  our website EyeOnGraceFoundation.org
• 35:23
  and i try to tell people um
• 35:25
  you don't have to donate you know
• 35:26
  this something big it could be twenty five dollars
• 35:29
  it could be twenty five dollars a month and
• 35:30
  and that just adds up i mean
• 35:32
  that's somebody's gas that's somebody's tool
• 35:34
  that's somebody's uber drive
• 35:35
  um and then i
• 35:36
  so people ask me all the time
• 35:38
  like about how much is it for a person to travel
• 35:41
  and you and i both know if it's two people
• 35:43
  easily it's a fifteen hundred dollar um
• 35:45
  you know with food
• 35:46
  for sure even just me
• 35:47
  california like when i travel to california
• 35:50
  i live in arizona i'm next door
• 35:52
  and just for me and my husband to fly to california
• 35:54
  instead of drive so that it was less physically
• 35:56
  you know strenuous and taxing on my body
• 35:59
  it was about fifteen hundred total
• 36:01
  between hotel and flight and that was just two of us
• 36:04
  right and when you think of that
• 36:05
  those sweet people who have to go
• 36:07
  you know our
• 36:08
  IDE 196 people they're going every three weeks
• 36:11
  you think about your IE people
• 36:12
  they're going once a month
• 36:13
  you you know you're
• 36:14
  and then you got the scans and all the other things
• 36:16
  it just adds up and so yeah
• 36:18
  it does yes
• 36:18
  for all the people who who donate um
• 36:21
  it is amazing to see what
• 36:23
  what has been able to happen with it
• 36:25
  and the i mean
• 36:26
  these are life sustaining
• 36:27
  potentially life saving moments
• 36:29
  and i know Sophie won't mind me sharing
• 36:31
  cause she's been so gracious
• 36:33
  but like
• 36:33
  Sophie Stevens going to get till treatment
• 36:36
  and it's worked so well for her um
• 36:38
  that those are very expensive trips
• 36:40
  and so in her situation
• 36:41
  not only was she able to look into what we could cover
• 36:45
  but
• 36:45
  i think this would be a good time for us to talk about
• 36:47
  what other options are out there
• 36:48
  and there's another foundation that um
• 36:51
  that i think a lot of it's kind of newer on
• 36:53
  on to me
• 36:53
  it's newer on our platforms
• 36:56
  it keeps coming up but it's the Christine Fox Frauenheim
• 36:59
  so CFF Christine Fox if you just google that her
• 37:04
  her uh
• 37:05
  foundation will come up
• 37:06
  and she passed away a few years ago
• 37:08
  um she had done Kimmtrak for a while
• 37:10
  but her husband and her um
• 37:12
  brother or it's her husband's brother
• 37:14
  i can't remember um
• 37:15
  but they they run this foundation
• 37:17
  and i have been able to say
• 37:19
  you know we can't cover this whole trip
• 37:21
  but could y'all could y'all cover this
• 37:22
  could you help whatever
• 37:23
  yeah and they do
• 37:24
  and they also will cover other things
• 37:26
  like A Cure In Sight does this as well um
• 37:29
  so people need to know A Cure In Sight has a
• 37:31
  a travel fund that you can apply for
• 37:33
  but y'all also will cover things that i can't cover
• 37:36
  like my by laws are strictly state
• 37:38
  i've had people ask me could you cover my um
• 37:42
  my mortgage or yeah
• 37:44
  or water bill i mean
• 37:45
  i'm just giving an example
• 37:46
  yeah of
• 37:47
  of something that A Cure In Sight will help to cover
• 37:49
  specifically yes
• 37:50
  and and the front
• 37:51
  the Christine Fox Foundation they
• 37:54
  they can do that as well if you have a need
• 37:56
  they can help meet that need
• 37:57
  i can't do that so um
• 37:59
  but that organization i do know
• 38:01
  when you and i talked about the OMF
• 38:03
  which is like the Ocular Melanoma Foundation
• 38:04
  they have on their website a place
• 38:07
  i'm not sure how active that travel grant process is
• 38:10
  um but again there's
• 38:11
  there's other organizations
• 38:13
  i want to say that MRF through Cure OM has
• 38:17
  has a travel grant process
• 38:18
  that you can have some degree of a
• 38:20
  i don't i don't remember the exact process
• 38:22
  i just know it exists and
• 38:23
  and similar to i mean
• 38:26
  i guess i can only speak to A Cure In Sight
• 38:28
  and so to your point
• 38:29
  like A Cure In Sight cannot cover everything either
• 38:32
  and A Cure In Sight is because and
• 38:34
  and i wanna explain this for people
• 38:36
  Ashley's foundation the Christine uh
• 38:38
  Christine Fox
• 38:40
  i'm saying it the CFF Frauenheim
• 38:42
  yes Frauenheim
• 38:43
  The Christine Fox Frauenheim Foundation
• 38:45
  they exist to to meet a very specific need
• 38:49
  and A Cure In Sight
• 38:50
  is the largest patient advocacy organization
• 38:53
  the most active patient advocacy organization
• 38:55
  in the world for ocular melanoma specifically
• 38:57
  and while we do have financial aid
• 39:00
  we also fund research
• 39:01
  we also host 5Ks and help gather research
• 39:05
  research funds for local doctors like say
• 39:08
  Dr. Prithvi Mruthyunjaya at Stanford Byers Eye
• 39:11
  like if they raise fifty thousand dollars
• 39:13
  we say okay
• 39:14
  Dr. Prithvi like
• 39:15
  you get half the funds to go to your own research
• 39:17
  at this facility for ocular melanoma
• 39:19
  so we we are really far
• 39:23
  far reaching in the types of assistance
• 39:25
  and the types of resources that we offer here
• 39:27
  at A Cure In Sight we have um
• 39:29
  sponsorships that help to fund like this our
• 39:31
  our podcast
• 39:32
  we have sponsorships that are helping to pay uh
• 39:35
  for the cost of production
• 39:36
  because it does cost money to produce a podcast episode
• 39:39
  to have it professionally edited
• 39:41
  and then to put it out there in the world
• 39:43
  our conferences
• 39:44
  the Eye Believe conferences
• 39:45
  and those of you guys who attended the Eye Believe
• 39:47
  conference this year you got to see that
• 39:49
  we were privileged enough to have support
• 39:50
  from Eye On Grace
• 39:52
  to help people to travel to the Eye Believe conference
• 39:55
  Ashley and Melody who's the founder of A Cure In Sight
• 39:57
  were able to come together and collaborate
• 39:59
  and i just i think that it is
• 40:02
  it is so important that people recognize that yes
• 40:04
  Eye On Grace is here right
• 40:05
  and the CFF foundation is here
• 40:07
  and some of these very unique
• 40:08
  travel specific foundations do exist
• 40:10
  but please don't let that deter you from applying
• 40:13
  especially if you're in a far more dire situation
• 40:15
  and you max out because
• 40:17
  i mean i
• 40:17
  i don't know how quickly
• 40:19
  twenty thousand dollars could be used up
• 40:20
  but i can imagine if you're traveling every week
• 40:22
  it'll go quick
• 40:23
  i mean i
• 40:23
  i think ashley
• 40:24
  you would probably know better than anyone
• 40:25
  because you used to travel every single week
• 40:28
  so if you can imagine say
• 40:29
  fifteen hundred
• 40:30
  so three thousand dollars in flights times fifty two
• 40:33
  i'm pretty sure
• 40:34
  that's gonna be more than twenty thousand dollars
• 40:35
  like i'm pretty sure
• 40:37
  yeah absolutely absolutely
• 40:39
  so that's that's
• 40:39
  i mean
• 40:41
  it's just so
• 40:42
  it's so important that you guys listening
• 40:44
  recognize we are not in competition with each other
• 40:47
  and ashley you've talked about this before
• 40:49
  we are not in competition with each other
• 40:51
  ashley wants A Cure In Sight to continue to succeed
• 40:54
  and to raise funds and to be able to have what we need
• 40:57
  to serve the patient community
• 40:58
  as much as we want her
• 40:59
  to be able to serve the patient community
• 41:01
  and we each do that in very unique ways
• 41:03
  ashley does it in very
• 41:04
  a very specific way through Eye On Grace
• 41:06
  and A Cure In Sight does it in kind of a
• 41:09
  a mixture um a
• 41:10
  a mixture of ways
• 41:11
  and those ways all have a very significant impact
• 41:14
  in different ways financial or otherwise
• 41:16
  so i'm just gonna piggyback on what you said
• 41:18
  because i do think it is important that we recognize
• 41:20
  as well
• 41:21
  if you are donating on a monthly basis
• 41:23
  say you've taken you've taken the challenge from ashley
• 41:26
  right and you're donating twenty five dollars
• 41:28
  on a monthly basis to Eye On Grace
• 41:30
  or to some specific foundation
• 41:32
  that very specifically funds travel
• 41:34
  and you're willing
• 41:36
  i just wanna dispel a myth
• 41:37
  i think that's what i wanna do um
• 41:38
  because i think that there's a myth in donating
• 41:40
  to an organization that does more widespread things
• 41:44
  right like A Cure In Sight
• 41:45
  we have lots of programs
• 41:46
  i think there's a myth that like
• 41:47
  somehow we decide exactly what to do
• 41:50
  you know with the money
• 41:50
  and i say we but like the board of A Cure In Sight
• 41:53
  here's the thing
• 41:54
  if you make a donation on A Cure In Sight's website uh
• 41:57
  and you go in and you put in the notes
• 41:59
  i want this to go specifically to travel aid
• 42:03
  or to financial aid only for like
• 42:04
  serving the patient community directly
• 42:07
  then we honor that like
• 42:08
  i mean that that's what it goes
• 42:09
  it's like a contract it
• 42:10
  it goes in writing and
• 42:12
  and the money you say you want to go to say research
• 42:14
  it goes to the research bucket um
• 42:16
  and so
• 42:17
  you can designate where you want your funds to go
• 42:19
  your you know it's
• 42:20
  it makes it easy in some place like
• 42:21
  like with Eye On Grace
• 42:23
  it's super easy because there's just one bucket right
• 42:25
  it's the travel bucket but if you want your money
• 42:28
  say you have a the ability to donate fifty dollars
• 42:31
  and you want half of it to go to research
• 42:33
  and half of it to go to A Cure In Sight's
• 42:34
  financial aid program
• 42:35
  to directly help patients with travel or their
• 42:39
  their hospital bill
• 42:40
  we have the ability to
• 42:42
  to fund whatever need or to reimburse whatever need
• 42:45
  up to a certain point we have a cap each year
• 42:47
  depending on how much money we raise
• 42:48
  but i wanna i wanna be a little blunt and just say
• 42:51
  if you have decided
• 42:52
  that you're only going to donate to one organization
• 42:54
  that is only funding travel
• 42:56
  then you're going to see a drop off
• 42:58
  in these other organizations
• 42:59
  that have the ability to meet other needs
• 43:01
  aside from just travel like to help pay your mortgage
• 43:03
  or to pay an electrical bill
• 43:06
  to help pay for your groceries
• 43:07
  like other organizations have different limitations
• 43:10
  and they they can help each other bridge gaps
• 43:13
  right because like you said
• 43:14
  you can't do everything
• 43:16
  Eye On Grace cannot do more than just travel
• 43:18
  and so we wanna bridge the gaps together
• 43:20
  and we want i mean
• 43:21
  i just i want you guys listening to know that we
• 43:23
  we want each other to succeed and
• 43:25
  and i truly believe that if
• 43:27
  if we have people
• 43:28
  who are willing to donate a hundred dollars
• 43:30
  on a monthly basis
• 43:32
  that it's not going to do any kind of a disservice
• 43:34
  to say okay sure
• 43:35
  i'm gonna donate that but i'm gonna
• 43:36
  i'm gonna split it three ways or five ways
• 43:39
  or i'm gonna donate a hundred dollars
• 43:40
  to each organization like
• 43:41
  there's no wrong answer here guys
• 43:43
  if all you can do is twenty dollars a month
• 43:46
  like making that regular donation
• 43:48
  and making it a recurring donation
• 43:50
  like ashley suggested
• 43:51
  to go to any of these organizations
• 43:53
  that you wanna support
• 43:54
  it makes the world of a difference
• 43:55
  and it it's like you said ashley
• 43:56
  it it can be the difference
• 43:57
  between somebody having the gas money
• 44:00
  that they need to actually get from place to place
• 44:02
  or the tiny little bit that's gonna bridge the gap in
• 44:05
  can we cover the whole hotel bill
• 44:06
  or just a portion of it
• 44:08
  so please don't underestimate the ability of your
• 44:10
  yourself to make an impact
• 44:12
  even if your donation and your contribution to us
• 44:15
  as different organizations is small
• 44:17
  i think that's a really good point
• 44:19
  and just to to show you how seriously i take it
• 44:22
  i personally make contributions to A Cure In Sight
• 44:25
  pretty regularly throughout the year
• 44:27
  and or
• 44:28
  you know if somebody's having a birthday fundraiser
• 44:31
  for A Cure In Sight
• 44:31
  i'll probably be one of the first people to um
• 44:34
  to to go toward that
• 44:35
  birthday fundraisers
• 44:36
  one of the only good things for facebook these days
• 44:39
  right yeah
• 44:40
  so the only other thing
• 44:41
  i think you and i said that we wanna talk about
• 44:43
  that we hadn't um
• 44:44
  but is worth mentioning is um
• 44:46
  Danet is gonna have something that's attached to this
• 44:48
  it's another resource page and
• 44:50
  and one of the things that i've appreciated
• 44:51
  for example there's a sweet girl
• 44:53
  Cassie Person um
• 44:55
  that she lives in in lower alabama's um
• 44:58
  and she uses Pilots For Christ to fly her to philly um
• 45:02
  when she goes up there
• 45:03
  and then she uses us for her apartment
• 45:05
  i mean not her apartment
• 45:06
  her um
• 45:07
  hotel and she has set that up
• 45:09
  so there are different organizations
• 45:11
  that helps with flights there's Sky Hope
• 45:14
  there's um
• 45:15
  of course like i said
• 45:16
  Angel Flight
• 45:18
  and so um
• 45:19
  again they have their own process
• 45:21
  but i actually appreciate it when people say
• 45:23
  you know what we've got our flight covered
• 45:25
  i mean the flight can be the biggest expense right
• 45:28
  like i mean
• 45:28
  the flight really
• 45:29
  can be the biggest part of the expense
• 45:31
  it's something we're looking into right now
• 45:33
  we we is
• 45:34
  is a huge process but with every airline
• 45:36
  we are filling out an application for us to be able to
• 45:40
  for you to be able to donate your miles
• 45:41
  for example back to delta sky miles
• 45:43
  and us be able to go in and use that
• 45:45
  but then you may know somebody today
• 45:47
  that actually has sky miles
• 45:48
  they can they can donate them directly to you
• 45:51
  oh and there are okay
• 45:52
  there are people who can do that
• 45:54
  and so i was just gonna tell people like you
• 45:56
  may know somebody who flies corporately for their work
• 45:59
  that they've had more sky miles
• 46:01
  you can imagine how many sky miles i have
• 46:03
  i can imagine i mean
• 46:04
  i'm sure they want okay
• 46:05
  so knowing how many i have
• 46:07
  there are people who do just like me
• 46:09
  but they travel for work and so i think
• 46:11
  you know why not approach somebody like that
• 46:13
  hey would you like to make a donation to
• 46:16
  to my job yeah
• 46:17
  i mean once you get that up and running
• 46:20
  please please share it with us
• 46:21
  because that is phenomenal
• 46:22
  it's well
• 46:23
  it's something that i'm gonna go ahead and tell you
• 46:25
  every airline has something like it
• 46:27
  and it is buried you have to dig far to find it
• 46:31
  but it is an application process that they can say yes
• 46:33
  people can donate like
• 46:35
  you could call ups delta now and say
• 46:37
  i would like to donate mine
• 46:38
  to the Eye On Grace Foundation
• 46:40
  and we would be able to utilize that
• 46:42
  i guess let's give a specific example
• 46:44
  let's say you're a flight attendant
• 46:45
  or you have i don't know
• 46:46
  your sister is a flight attendant
• 46:48
  and she accumulates miles from
• 46:50
  just because she's an employee
• 46:52
  because she flies
• 46:53
  maybe a little more often than the average person
• 46:55
  let's say she accumulates
• 46:56
  i don't know fifty thousand miles
• 46:59
  fifty thousand flight miles
• 47:00
  and that's frankly
• 47:00
  that's probably a low number
• 47:02
  to be honest that's a low number
• 47:04
  that's a pretty low number
• 47:06
  but that would cover one person's round trip flight
• 47:09
  for the most part i mean
• 47:09
  depending on the airline and uh
• 47:12
  i think that'll be a really unique resource
• 47:14
  and to your point about all of these resources
• 47:16
  like you guys listening
• 47:17
  we've talked about a lot and i personally i
• 47:20
  i mean i know that some things
• 47:22
  especially if i'm listening to a podcast
• 47:24
  like say
• 47:24
  while i'm doing the dishes or while i'm driving
• 47:26
  please be safe while you're driving
• 47:27
  like don't
• 47:28
  don't be looking at stuff while you're driving
• 47:29
  but if you're listening to this
• 47:31
  and you're kind of doing other things
• 47:32
  please know that i'm gonna do everything that i can
• 47:34
  to put this together in a shareable way
• 47:37
  my plan actually
• 47:38
  just actually
• 47:39
  and talking with you
• 47:40
  is that what i'm gonna do is i'm gonna make a canva pdf
• 47:42
  and so it's gonna have all the travel resources listed
• 47:45
  we will list this on our website
• 47:47
  on A Cure In Sight's website where we can like
• 47:49
  link it we'll put it out in the newsletter
• 47:51
  we'll put it out on social media
• 47:52
  i'm making all these promises
• 47:53
  so megan like
• 47:54
  who's also a social media person
• 47:56
  she's gonna be listening be like okay Danet uh
• 47:58
  okay we're doing that anyway but
• 48:00
  but we want this to get out there to people because
• 48:03
  yeah like you said ashley
• 48:05
  like there
• 48:06
  there would be so much alleviated
• 48:08
  for the mental and the emotional
• 48:10
  the financial load on each patient and their families
• 48:12
  if we just could make these connections
• 48:14
  and sometimes we're just
• 48:16
  we're too far in the pit of despair
• 48:17
  to make these connections ourselves right
• 48:19
  so i'm so glad that people like you exist
• 48:21
  who are willing to talk about this
• 48:23
  and just put it out there that there are resources
• 48:25
  and we want you to find them
• 48:27
  not just the ones that are important to us
• 48:29
  because ashley founded Eye On Grace
• 48:31
  or because melody founded A Cure In Sight
• 48:33
  we want you to find all the available resources to you
• 48:36
  so we're gonna do our best to make the
• 48:38
  make that list of resources
• 48:40
  include some interactive links on the pdf
• 48:42
  and if you are someone listening to this episode
• 48:44
  and you hear or you know of something specific
• 48:47
  that we haven't covered then please
• 48:50
  please please tell us
• 48:51
  list it in the comments send us an email
• 48:53
  you can send an email to
• 48:54
  contact@ACureInSight.org
• 48:56
  we would love to know and
• 48:57
  if you have specific connections
• 48:58
  you think would be helpful for ashley
• 49:00
  with the Eye On grace Foundation
• 49:01
  then um
• 49:02
  ashley what's the best email for them to contact you
• 49:05
  so we're like y'all
• 49:06
  we're now at info@EyeOnGraceFoundation.org
• 49:09
  and um i
• 49:10
  i would say
• 49:11
  i would love for people to send stuff like that because
• 49:13
  um you brought up something earlier haha
• 49:16
  for one i always tell people
• 49:18
  when i have our initial conversation with them
• 49:19
  i don't wanna over promise and under deliver
• 49:22
  i don't wanna tell you that we can cover all this
• 49:23
  and you make all these grand plans
• 49:25
  and us not have the money
• 49:26
  and y'all in the month of july alone
• 49:28
  we paid out over forty thousand dollars
• 49:29
  in travel grants and i won't i
• 49:31
  i would be lying if i said
• 49:32
  that did not cause me to pause
• 49:35
  because i thought
• 49:35
  are we gonna have the amount of money coming in
• 49:37
  that we are gonna have going out
• 49:39
  and fortunately we do but um
• 49:41
  but it it could be a reason if
• 49:43
  if this got out and i'm
• 49:44
  i'm sponsoring everybody and their brother um
• 49:47
  do we have enough money coming in
• 49:48
  so when people go um and
• 49:50
  and tell us hey we there's
• 49:52
  there's this resource
• 49:53
  that can free up money for other people to use
• 49:55
  i appreciate that i do
• 49:57
  i appreciate that because i'm like
• 49:58
  you're thinking of others
• 49:59
  and i appreciate it it's so important that we
• 50:02
  that we get creative with this
• 50:04
  i think because to
• 50:06
  to your point it's not just the
• 50:08
  the goal here is not just throw money
• 50:11
  wherever we think we should throw money and
• 50:13
  and i i say that kind of casually but
• 50:16
  but like you said if
• 50:17
  if there's two thousand dollars total per trip um
• 50:20
  between a caregiver and a patient that they can take
• 50:22
  and you can help to free up and
• 50:25
  and make it so that you don't need that whole
• 50:27
  two thousand dollars then that frees up
• 50:29
  maybe another thousand
• 50:30
  that can go toward another patient
• 50:32
  more frequently
• 50:33
  who doesn't have the ability to connect with say
• 50:35
  Angel Flight or Host for Hospitals or Extended Stay
• 50:39
  America is through the American Cancer Society
• 50:41
  that i found them this summer
• 50:42
  like there's so many resources out there
• 50:44
  and we're gonna do our best
• 50:45
  to connect you with as many of them as we can
• 50:48
  um but like i said
• 50:48
  if you guys know of more please tell us
• 50:50
  we want to know and we want to spread the news
• 50:53
  yeah thank you so much really for
• 50:55
  for doing this because um
• 50:57
  i think had i not had um
• 51:00
  this aflac plan
• 51:01
  and i would have sat down at the kitchen table i
• 51:03
  with my husband to say ok
• 51:05
  what are we gonna do i don't
• 51:06
  i don't know that i would have
• 51:07
  i think i would have hit the pit of despair
• 51:10
  yeah i
• 51:10
  i do have people who when we talk to them
• 51:13
  and i know y'all have this situation too
• 51:15
  when we're able to help somebody
• 51:16
  and they are completely blown away that this
• 51:20
  this part of the equation has been handled for them
• 51:23
  um the emotion behind it
• 51:26
  the the relief is significant
• 51:28
  you know i've had people who have said
• 51:30
  we were literally sitting here saying
• 51:32
  how many months can we go without paying our mortgage
• 51:35
  because we're gonna have to pay this is
• 51:36
  this is equal to a mortgage payment
• 51:38
  and we don't have the money for both
• 51:40
  and to hear that our foundation
• 51:41
  and that your foundation
• 51:42
  and things like that could actually help um
• 51:45
  is is significant and um
• 51:47
  the Christine Fox Frauenheim Foundation
• 51:49
  you know their motto is you
• 51:51
  you're not alone you're not doing this alone
• 51:53
  and i think we all feel that way
• 51:55
  that we all want to just hold each other's hands
• 51:56
  and say we're gonna get through this together
• 51:59
  um the other thing is
• 52:00
  you know when
• 52:01
  and this has been really i'm gonna be very transparent
• 52:03
  about something that is hard
• 52:04
  my mother had breast cancer and is a survivor
• 52:07
  and so this is not a bump against like
• 52:09
  breast cancer month
• 52:10
  but i'm just gonna use it as an example
• 52:12
  there's so many resources for breast cancer
• 52:15
  and i'm so excited and i want it to be that
• 52:17
  resources for my mom that we were able to use
• 52:20
  but sometimes i'll see that
• 52:21
  and i'll be a little envious
• 52:22
  like i'm like
• 52:23
  i want nobody's wearing blue and black socks for me
• 52:26
  in the month of may
• 52:27
  and everybody's wearing the pink socks
• 52:28
  but i don't mean that bad
• 52:29
  i'm just saying
• 52:30
  when i look at the resources that are available
• 52:32
  and what we have in terms of resources
• 52:34
  it's vastly different and so
• 52:36
  we want people to know that
• 52:37
  there are resources for ocular melanoma
• 52:39
  specific to ocular melanoma
• 52:41
  and we want people to know out there who
• 52:43
  who want to help in some significant way
• 52:46
  that we don't want you to disturb giving to
• 52:48
  for breast cancer for colon cancer
• 52:50
  or whatever but this is a unique niche of people
• 52:53
  like you've said that
• 52:53
  that really could use your help
• 52:55
  so
• 52:55
  if there's anybody that somehow sees this and is like
• 52:57
  i'd like to make a difference in the world for somebody
• 52:59
  you can make a difference here
• 53:01
  and in the world of ocular melanoma
• 53:03
  and helping people travel for life sustaining and life
• 53:06
  um potentially saving treatment
• 53:08
  um to get people to a clinical trial
• 53:10
  that can make a difference in ten years from now
• 53:14
  yeah that's significant
• 53:15
  and um
• 53:15
  we're very proud of what we do
• 53:17
  it's extremely humbling to see what we do
• 53:19
  and you know i
• 53:20
  i say it's so it's so wonderful
• 53:22
  that i have something positive to focus on
• 53:24
  every single day i don't get paid to do what i do
• 53:27
  melody doesn't get paid to do what she does
• 53:29
  and we pay our administrator
• 53:30
  and that's it um
• 53:32
  and so we we just take a lot of pride in what we do
• 53:34
  but there's a lot of humility in that
• 53:36
  that we couldn't do what we do
• 53:37
  without the support of other people
• 53:39
  and y'all are the same way
• 53:41
  and so that's why i think we collaborate so well
• 53:43
  because when people talk to me and they're like
• 53:45
  i don't know anything about this
• 53:46
  i'm like go A Cure In Sight
• 53:48
  they will give you the information
• 53:49
  here's all the resources Danet and
• 53:51
  megan have been on youtube for years exactly
• 53:53
  we got thousands of videos for you
• 53:56
  it is phenomenal how i think it's all coming together
• 53:58
  so thank you um
• 54:00
  for for
• 54:01
  for doing this today
• 54:02
  for bringing it to everybody's attention
• 54:03
  i think it's gonna spark a lot of unique conversations
• 54:06
  um and
• 54:06
  and i think it's gonna be great
• 54:08
  so thank you absolutely well
• 54:11
  i couldn't have said it better myself
• 54:12
  ashley
• 54:13
  thank you so much for being a guest on the Eye Believe
• 54:14
  Podcast yet again
• 54:15
  i just want to give a plug to our sponsors
• 54:17
  who make this podcast possible
• 54:19
  we are supported by Castle Biosciences
• 54:21
  by Immunocore and by Delcath
• 54:23
  and by Aura Biosciences so
• 54:25
  thank you to our sponsors
• 54:26
  for making sure that we have the ability
• 54:27
  to get these resources out to patients
• 54:29
  please consider making a donation
• 54:31
  following us and subscribing on our youtube channel
• 54:33
  or on the podcast platforms that you follow
• 54:36
  and take a look at the resources in the comments
• 54:38
  and just stay tuned for that resource pdf
• 54:40
  that i'm gonna make uh
• 54:41
  accessible to everybody listening to this episode
• 54:44
  and hopefully you guys can just share it far and wide
• 54:46
  and this will this will really make a big um
• 54:48
  i don't know if you guys have heard the idea of like
• 54:50
  a ripple effect right
• 54:50
  like the pebble goes in the pond
• 54:52
  and the ripples just keep going right
• 54:54
  and if two of you share this video
• 54:57
  or two of you share the pdf
• 54:58
  that we're gonna have available for you
• 55:00
  and then four more of you share it
• 55:01
  like just imagine the reach that this
• 55:03
  this will have and being able to share and
• 55:05
  pay it forward to other patients
• 55:07
  pay it forward to other families
• 55:08
  so ashley
• 55:09
  thanks so much for your passion
• 55:10
  and we will talk to you guys next time sounds great