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Melanoma Research Foundation and CURE OM · The Eye Believe Podcast

• 0:02
  hi welcome back to the Eye Believe Podcast
• 0:05
  today I am joined by Kyleigh LiPira
• 0:08
  and she is the CEO of the Melanoma Research Foundation
• 0:12
  and Kyleigh has been with the organization since 2,015
• 0:16
  prior to her tenure at the MRF
• 0:18
  she held multiple positions at Johns Hopkins Medicine
• 0:22
  and first leading the fundraising efforts
• 0:24
  at The Sidney Kimmel Comprehensive Cancer Center
• 0:27
  and later leading the fundraising department
• 0:30
  in the department of Dermatology
• 0:32
  increasing its residency and fellowship program
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  as well as founding the first ethnic skin Fellowship
• 0:38
  Kyleigh graduated from Carleton University in Ottawa
• 0:41
  Canada with a degree in Mass Communication and English
• 0:45
  and received her MBA from the
• 0:47
  Johns Hopkins Carey Business School
• 0:49
  alright so Kyleigh
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  thank you so much for joining us
• 0:51
  we're so glad you could be here
• 0:52
  great thank you so much for having me Danet
• 0:55
  okay so
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  can you tell us how and when
• 0:57
  the Melanoma Research Foundation was founded
• 0:59
  and why absolutely
• 1:01
  so the MRF which it is commonly known
• 1:04
  was founded in 1996 by a patient
• 1:07
  who was dealing with her third recurrence
• 1:09
  of metastatic melanoma and at that time
• 1:13
  there were very few options available
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  in fact there were only three FDA approved treatments
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  and it was really out of her own frustration that she
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  had such limited options that she founded the MRF
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  and over the last 28 years now
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  our mission has grown you know
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  we first started off as a big funder
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  in the research space and thankfully
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  over the last
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  28 years there have been multiple funders
• 1:40
  including the department of defense
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  that has come in and um
• 1:45
  and funded melanoma research as well as ocular melanoma
• 1:48
  which is really exciting but our mission evolved
• 1:51
  so now we have a tripartite mission of funding research
• 1:56
  educating patients and caregivers
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  and advocating on behalf of the melanoma community
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  both on a federal and state level
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  and we are and continue to be
• 2:06
  a completely independent organization
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  so we are not a family foundation
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  we have a completely independent board of trustees
• 2:16
  who are actually patients and caregivers themselves
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  so about 60% are stage 4 melanoma survivors
• 2:23
  and the other 40 have been impacted by melanoma in
• 2:26
  in a variety of different ways
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  so can you tell us how the CURE OM extension of
• 2:32
  or of the Melanoma Research Foundation began
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  and what their specific mission is
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  yeah it's a great question
• 2:39
  so at the MRF we focus both on cutaneous
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  which is skin melanoma
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  as well as the rare subtypes in melanoma
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  and those are ocular mucosal
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  pediatric and acral
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  and the CURE OM initiative
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  which a lot of people always ask us
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  what does CURE OM stand for um
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  it stands for Community United for Research
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  and Education of Ocular Melanoma
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  and this particular initiative was founded at the MRF
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  in 2011 by a patient and a caregiver
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  so again
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  people who are personally impacted by the disease
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  and the mission of the CURE OM Initiative
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  which again is a program underneath the MRF
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  umbrella is to accelerate research
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  find new and effective treatment options
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  and to increase awareness
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  education and support of patients
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  clinicians and researchers
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  so the initiative itself really marries um
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  and mirrors the MRFs overall mission of research
• 3:36
  education and advocacy
• 3:39
  wonderful so just to recap
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  and I think I heard it in what you just said
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  but just to recap and kind of clarify
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  can you tell us which community CURE OM specifically serves
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  absolutely it's the ocular melanoma community
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  so you know
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  on average
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  about 2,000 people are diagnosed with ocular melanoma
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  every year so it is a big program within the MRFs
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  overall um
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  programmatic offerings focus solely on ocular melanoma
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  okay and I'm gonna just interject with the
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  that includes the patients
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  the caregivers as well as the physicians
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  based on what you said in the first part
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  to the other question that's correct
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  so patients caregivers
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  clinicians researchers
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  and we also have an awareness campaign that I would say
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  also really encapsulates the general public
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  as well which is called #EyeGetDilated
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  which is to create awareness about eye health
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  um many people are diagnosed with OM
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  after they have a dilated eye exam
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  so we're really encouraging the general public
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  to treat their eye health
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  as they would you know
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  getting an annual wellness exam or
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  for women at a certain age
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  getting a mammogram so
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  really creating that awareness about the eyes
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  and the importance of eye health
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  so can you tell us within CURE OM
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  what programs and resources
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  do you offer the ocular melanoma patient community
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  absolutely so as I mentioned
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  we have research education
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  and advocacy as our pillars
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  so I'll start with research
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  so under that umbrella um
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  we fund ocular melanoma research grants
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  so to date it's been about 2.5 million
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  solely focused on ocular melanoma research
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  and what we have done over the last seven plus years
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  is really involve patients and caregivers
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  in that grant review process
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  so that they can review these grants and add their own
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  um insights as a patient into those
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  those grant review um papers
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  the other way that we involve patients and caregivers
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  in the research space is
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  we work very closely with the Congressionally Directed
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  Melanoma Research Program
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  which is a 40 million dollar line item
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  through the department of defense
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  and over the last two years
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  there has been a carve out of 2 million dollars
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  specifically for rare melanomas
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  of which
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  ocular melanoma has received considerable funding
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  so we nominate patients and caregivers to serve as
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  what they call consumer reviewers
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  um it's all the
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  all the government language um
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  but really to give their opinion and their insights
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  through the government um
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  the grant program so that's kind of how they
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  how we really involve and facilitate patients um
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  in research the other piece is our Vision Registry
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  so this is a patient reported registry
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  where patients can input their own data
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  about their journey
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  and their experiences with ocular melanoma
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  and the goal of the registry is really
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  to inform both on the natural history of the disease
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  because as a rare disease
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  there's a lot of gaps of knowledge
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  and also to inform research
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  so how can we use patient reported outcomes
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  in research grants
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  to further the knowledge in the field
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  so that's
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  that's kind of the research bucket on education
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  we have a lot of opportunities
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  for patients and caregivers
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  and that is through our education institute
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  so we have educational materials
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  which we mail out at no cost to the community
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  and this these range from um
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  you know general awareness pieces
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  like our #EyeGetDilated campaign that I mentioned
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  to a recently diagnosed booklet
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  for patients and caregivers
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  that explains the different stages of the disease
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  and additional resources that they could utilize
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  um we also have webinars
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  and these are put on pretty frequently um
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  more frequently when there are FDA approvals
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  like the last couple of years
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  with the two FDA approvals um
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  and those again we incorporate both experts
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  as well as patients in those webinars
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  and then the last piece is advocacy
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  and I feel like this is a really um
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  exciting way
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  for patients and caregivers to get involved
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  because there are a lot of policy issues
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  that disproportionately
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  affect people with a rare cancer
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  so for example
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  every year
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  we bring advocates to the hill to talk to lawmakers um
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  on a slate of different policy issues
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  and one that has been on the table the last two years
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  is telehealth
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  and as many patients with ocular melanoma know
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  they often have to confer with specialists
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  outside of the state that they're living in
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  and pulling telehealth back
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  which was really kind of the wild west during covid
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  um pulling that back and pulling some of those um
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  really rights that patients had during covid back
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  with new policies or sun setting existing policies
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  is really gonna harm patients
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  who have rare forms of melanoma
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  so
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  really working with our advocates across the spectrum
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  both in cutaneous as well as in the rare subtypes
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  like ocular to use their voice and use their story
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  to talk to lawmakers
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  so that's sort of under the three pillars
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  that's a lot of information
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  and then the other piece is support services
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  so we lead a patient support group
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  with Thomas Jefferson University
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  for patients
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  as well as we have an oncology nurse on staff
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  it's our ask a nurse program
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  so patients can email our nurse
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  and she can help navigate them
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  a lot of it's truly navigation
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  helping them find resources
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  getting them to the right center
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  so that's another really great
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  free resource that we have for patients as well
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  wonderful so
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  can you tell us if patients or caregivers
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  of those with ocular melanoma
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  are looking to connect with these resources
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  what would be the best way for them to do so
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  so there's a lot of different ways to connect
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  and I would say it's really on how they wanna connect
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  um the first step is signing up for our newsletter
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  I think that's a great resource
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  we have two we have our spotlight
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  which is a monthly e newsletter
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  which is for the General Melanoma Research Foundation
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  and I think that offers a lot of great resources
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  if people wanna get involved
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  wanna join a miles for melanoma 5k
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  we have a lot of CURE OM teams that participate in those um
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  that's one way if they wanna get involved in education
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  so they wanna attend a patient or caregiver symposium
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  they can email education@melanoma.org
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  and our team will we'll get them where they need to be
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  um or
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  if they want to participate in a webinar
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  and share their story um
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  again emailing education@melanoma.org
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  we also have social media
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  we have a CURE OM Facebook page and a CURE OM Twitter page
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  in terms of research
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  if they want to participate in as an advocate reviewer
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  um they can email research@melanoma.org
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  we have a regular cycle where people can
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  express their interest in being an advocate reviewer
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  we will train them so they're not getting
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  you know a hundred page proposal and
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  and having to decipher through it
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  they'll have a really great um
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  robust training on how to review a grant proposal
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  how to score a grant proposal
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  using the NIH scoring system
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  and um be a part of our research grant program
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  or if they want to get involved in advocacy again
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  they can email advocacy@melanoma.org
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  they can get dialed in to our advocacy program
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  and hopefully join us next March on the hill
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  when we take our training
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  and then go talk to lawmakers
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  that sounds like a lot of opportunities to connect
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  and just to get involved so thank you
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  you're welcome
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  can you tell us MRF
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  and CURE OM's
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  aims and goals for the future
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  what are they hoping to accomplish in say
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  the next five to 10 years
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  well I think that's a great question
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  and I think all of our aims
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  kind of also mirror our mission
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  um you know
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  the last few years
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  have been very exciting for the ocular melanoma
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  community there's two new
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  FDA approved treatments that have come on the horizon
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  which I think brings a ton of hope to the community
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  but we know there's still a long way to go
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  we know that not everybody
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  is responding to these treatments
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  so I think one of our big aims is how can we
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  as an advocacy group
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  really advocate for faster approvals
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  and that's really through the FDA
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  uh we held a listening session with the FDA
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  in January of 2020
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  and brought together patients and clinicians
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  and caregivers really
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  to urge the FDA to speed up its FDA approval process
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  and I think that does help move the needle
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  and I think we need more people in the community
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  really using their voice
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  to advocate for a faster approval process
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  um in terms of education
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  I think really
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  just empowering patients
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  and giving them the tools they need
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  to make educated decisions
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  and we know that the more educated a patient is
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  the better they're able to navigate their care
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  so that's a really big aim of ours
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  and our education team is really focused on
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  making sure that those education materials
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  are getting out into the community
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  and then from an advocacy point of view
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  I think you know
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  unfortunately the government works quite slowly
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  and these policies take a lot of time
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  but the more voices and the more people
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  are aware of the policies
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  that are in front of lawmakers
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  and how important their voices is
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  you know
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  having advocates talk directly to their lawmakers
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  makes a huge difference
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  in terms of how we can get things done
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  um so those are really the
• 13:40
  the aims of of the
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  of the CURE OM initiative but also again
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  you know as the MRF as a whole
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  we really want to create better outcomes for patients
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  and really open those doors and
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  and really see people thriving
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  and having hope for the future
• 13:56
  that's excellent so can you tell us um
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  just to kind of recap
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  I know you've alluded to it a few times in our um
• 14:02
  earlier parts of the interview
• 14:04
  but just tell us a little more specifically
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  um since this is such a hot topic
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  in the area of the cancer community
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  how does your organization vet and fund
• 14:12
  specifically research for ocular melanoma
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  maybe just walk us through
• 14:16
  break down the process sure sure
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  so um
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  our process is um
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  that once a year we put out a request for proposals
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  and
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  this typically happens at the end of the calendar year
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  usually in December and what we call an RFP
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  so I feel like a lot of times we
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  we talk in acronym
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  so it's an RFP or a request for proposals
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  and this goes out to the entire academic uh
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  community so they will receive this
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  this request for a proposal
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  and they need to submit it
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  no later than the end of March
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  when the proposals are received
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  we have a scientific advisory committee
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  of both clinicians and specialists in the field
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  as well as advocate and caregiver uh
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  reviewers that I mentioned earlier
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  and they are taken through the process
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  of reviewing these proposals
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  and we use the NIH scoring system
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  which is a little backwards
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  so one is the highest five is the lowest
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  and so the idea idea is really to have the lowest score
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  um and we always have to really pick the top proposals
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  and it's all based on the scoring
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  so there's several rounds of review
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  and then the
• 15:31
  the awards are typically announced in late summer
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  so July August time period
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  and to date we've funded 2.5 million
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  specifically in ocular melanoma research
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  most recently was a pilot grant of 250,000
• 15:49
  and that was the Options Bring Hope Award
• 15:52
  and that was actually funded directly by a family
• 15:55
  who's been impacted by ocular melanoma
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  so um
• 15:59
  it's it's a very rigorous process
• 16:01
  it's always hard to choose
• 16:03
  you know when you have so many grants
• 16:06
  but again it's really based on the scores and
• 16:08
  and the best science and um
• 16:10
  they have to submit a report after the first year
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  and then a final report
• 16:15
  so that we can then turn around
• 16:17
  and share those results with the community
• 16:19
  and to date it's been amazing
• 16:21
  you know over the last 25 years
• 16:23
  all of this investment in research
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  has not only resulted in patents
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  and new collaborations and
• 16:31
  you know furthering the field in many ways
• 16:34
  but it's resulted in FDA approvals
• 16:36
  and I think that is the most exciting thing to see
• 16:39
  that this influx
• 16:41
  and this investment has really created results
• 16:44
  well Kyleigh
• 16:45
  thank you so much for your time
• 16:46
  this has been hugely enlightening
• 16:48
  and I hope that patients and caregivers
• 16:49
  in the ocular melanoma community
• 16:51
  will be able to take advantage of the resources that
• 16:54
  MRF and CURE OM offer
• 16:55
  so thank you again for being here with us
• 16:57
  and we will see you guys next time
• 16:59
  thanks Danet