Stewardship Report Vol 7 Final


Stewardship Report

Mission Statement

The MRF’s mission is to eradicate melanoma by accelerating medical RESEARCH while EDUCATING to and ADVOCATING for the melanoma community. This critical work is made possible by the steadfast commitment, constant innovation and unwavering generosity of a community united in the fight against melanoma. Guided by the principles of responsible stewardship and continued progress, this report shares some recent highlights of what we have accomplished together.

The MRF strives for full transparency with its financial allocations because we serve patients and caregivers impacted by melanoma.

Progress is Power

We are inspired by and grateful for the steadfast support of melanoma patients, caregivers and advocates for their unwavering commitment to our mission, funding innovative and impactful research, helping to educate melanoma patients and the public and advocating for better patient outcomes. Our community has worked tirelessly to fund research advancements leading to tremendous progress and hope for the future of melanoma. Since 2011, 16 drugs have been FDA approved that can be used singly or in combination to treat 31 melanoma indications in adult and pediatric patients, including two drugs approved specifically for metastatic uveal (eye) melanoma. We know that more can be done to enable progress and we are elated to continue fostering more research and elevating our prevention and awareness initiatives until we have a cure for all impacted by melanoma.

I first became involved with the MRF like so many others, as a newly diagnosed patient looking for answers. The educational information, support and sense of community that I found at the MRF were invaluable to me during the most challenging time of my life. I’m honored to have the opportunity to give back to an organization that is unmatched in its commitment

to melanoma patients and caregivers,

Kyleigh LiPira Chief Executive Officer

while supporting the cutting-edge research advances that will lead us to a cure.

The Melanoma Research Foundation (MRF) was founded in 1996 by Diana Ashby, a melanoma patient who was frustrated by the lack of treatment options and support resources available at the time. Diana’s vision was to give melanoma patients and caregivers a reason for hope. Twenty-seven years later, her legacy lives on as the MRF has grown into the largest independent organization devoted to all types of melanoma, funding more than $25 million in life-saving research and offering a powerful voice for the 1.3 million Americans living with melanoma.

Douglas Brodman Board Chair

Table of Contents

Research and Science ............... Research — Rare Subtypes ...............

2 4

Donor Support and Events .......................................... 13

13 Education, Awareness and Prevention ............................... Education — Rare Subtypes ............. 10 6

18 Endowment ....................................

Leadership ........................................ 19

11 Advocacy ..........................................


Research and Science



From basic science to clinical trials, medical students to established investigators.

Medical Student Research Awards 108


Team Awards

Grants awarded in 2023, totaling more than $1,862,000. Includes:


Career Development

Established Investigator Awards

Awards 106


Team Awards (the MRF Breakthrough Consortium Young Investigator Team Award to Advance the Field of Translational Immuno-Oncology, generously supported by a grant from BMS and the CURE OM Options Bring Hope Team Award in honor of Lindsay Zubeck) Career Development Awards (CDA) (including the Silverstein Family Research Grant Challenge Women in Science CDA, supported by the 2nd Annual #GetNakedJaxBeachBash and a grant funded by the Cavan Family Foundation)


Merit Awards in conjunction with the Society for Melanoma Research (SMR)

MRF Endowed Merit Award in conjunction with Conquer Cancer, the ASCO Foundation




Mid-Career Bridge Grant

Donor-Directed Awards



MRF Breakthrough Consortium Pilot Translational Awards

Established Investigator Awards (EIA) (including a grant funded in honor of Cameron Reese Ward)

Merit Awards in conjunction with the Society for Melanoma Research (SMR) MRF Endowed Merit Award in conjunction with Conquer Cancer, the ASCO Foundation



Other Awards



NEW IN 2024: Prevention Award in Honor of 2023 #GetNaked Spokesperson Teddi Mellencamp, focused specifically on prevention of melanoma. Resident-Fellow Awards to promote research opportunities to resident/fellows early in their careers by funding clinical or laboratory-based research projects focused on better understanding prevention, early detection, behaviors that impact melanoma risk, biology and treatment of melanoma.

MRF Breakthrough Consortium Pilot Translational Award



Medical Student Research Awards



Research and Science


American Association for Cancer Research (AACR) One oral and three poster presentations of MRF-funded research April 14–19, 2023; Orlando, FL

Society for Melanoma Research (SMR) l Hosted the CURE OM Science, MRF Breakthrough Consortium and Global Coalition Meetings l Presented two MRF-funded Merit Awards l Two oral and two poster presentations of MRF-funded research November 6–9, 2023; Philadelphia, PA

Publications Following the Brain Metastases Summit 3.0, a white paper titled “Leptomeningeal Disease in Melanoma:

an Update on the Developments in Pathophysiology and Clinical Care”

was published in the journal Pigment Cell & Melanoma Research.

American Society of Clinical Oncology (ASCO) l Hosted the MRF Breakthrough Consortium Meeting and booth in the Advocacy Pavilion l Awarded one MRF Endowed Merit award in conjunction with Conquer Cancer, the ASCO Foundation May 31–June 4, 2023; Chicago, IL

Society for Immunotherapy of Cancer (SITC)

One poster presentation of MRF-funded research November 1–5, 2023; San Diego, CA


Research — Rare Subtypes


Publication of VISION Data Report


421 Participants

The VISION Platform (VISION) is in its third year of recruitment with nearly 500 registered participants from around the globe. VISION’s power is elevating the patient perspective by collecting patient- reported data. Working with an interdisciplinary and inter-institutional steering committee with patients and caregivers at its core, the VISION team published data from the second year of the VISION Registry in the 2023 VISION Data Report which can be accessed below. The VISION team is currently working with partners and stakeholders to incorporate VISION into ongoing clinical trials. Additionally, VISION continues to work with its Steering Committee to incorporate patients’ feedback and develop and implement new features to meet the needs of the ocular melanoma (OM) community. Key learnings from the VISION Platform can be found in the 2023 VISION Registry Data Report ( ).

37 States 9 Countries


Research — Rare Subtypes


Hosted Meeting CURE OM Global Science Meeting

New OM Grant Opportunity in 2024 The MRF is offering a new grant opportunity targeting residents and fellows to promote early- career research opportunities. We are excited to announce that one of these grants will be awarded specifically for ocular melanoma research.

CURE OM leads the ocular melanoma (OM) field forward each year by convening an annual global science meeting in partnership with the Society for Melanoma Research Congress. In the fall of 2023, the meeting was held in Philadelphia, PA bringing together an interdisciplinary group of global researchers and clinicians to catalyze critical research conversations focused on overcoming barriers and strengthening facilitators of progress bringing hope to patients. More than 30 speakers and close to 100 participants from around the world gathered in person with a shared interest to move the field forward, increase collaboration and coordination and improve the lives of patients with OM. The next CURE OM Global Science Meeting will be held in October 2024.

Publications Following the MRF Mucosal Melanoma Meeting, a white paper titled “Proceedings from the Melanoma Research Foundation Mucosal Melanoma Meeting (December 16, 2022)” was published in the journal Pigment Cell & Melanoma Research.

CURE OM Team Science Award: Options Bring Hope This Team Award provides funding for research focused on all patients with metastatic uveal melanoma not limited by HLA type. It was awarded to researchers focused on the “Identification of Molecular Pathways that Drive Uveal Melanoma Metastasis.”

Mucosal Melanoma Translational Working Group Launched in 2023, the Mucosal Melanoma

Translational Working Group is led by Richard D. Carvajal, MD (Northwell Health), Kasey Couts, PhD (University of Colorado Anschutz Medical Campus) and Benjamin Izar, MD, PhD (Columbia University). This group meets quarterly and focuses on collaborative opportunities, basic research and clinical trials/updates in mucosal melanoma.


Education, Awareness and Prevention


1 New Animated Melanoma Patient Video This module brings awareness to clinical trials, explains what clinical trials are, how they are

Education Institute A new online education platform that hosts Education Institute webinars, symposia and melanoma education courses. 2023 topics included: l  Melanoma in the Hispanic Population l  Emerging New Tool to Monitor Melanoma

conducted and why they are so important for patients with melanoma.

l  Early Detection of Mucosal Melanoma Through Routine Healthcare Exams l  Engaging the Melanoma

Clinical Trials in Melanoma

Community in Advocacy at Home and with Policymakers Visit to learn more.

SunAWARE Educational content

was promoted via digital campaigns from the MRF’s SunAWARE curriculum, a sun safety melanoma prevention curriculum program focused on K-12. Future goals include updating, digitizing and gamification of SunAWARE. A Spanish-language infographic has been created describing the diagnosis of melanoma. Copies are available for download and free ordering through the MRF’s Education Institute.


Education, Awareness and Prevention




l  Case Comprehensive Cancer Center (Cleveland, OH) l  UNC Lineberger Comprehensive Cancer Center (Chapel Hill, NC) l  Fred Hutch Cancer Center (Seattle) l  Weill Cornell Medicine Meyer Cancer Center (New York City, NY) l  Virtual National Patient and Caregiver Symposium (Zoom) l  Angeles Clinic (Los Angeles, CA) to be held in March 2024

+1 Virtual



Education, Awareness and Prevention

DERMATOLOGY ADVISORY COUNCIL (DAC) DAC Members Laura Ferris, MD, PhD (Co-Chair) Harper N. Price, MD, FAAD, FAAP (Co-Chair) Allan C. Halpern, MD, MSc Ata Moshiri, MD, MPH Brent Moody, MD, FAAD, FACMS Catherine Carretero, MD Crystal Aguh, MD Douglas Grossman, MD, PhD Dustin Portela, DO Elena Hawryluk, MD, PhD Hensin Tsao, MD, PhD James Grichnik, MD, PhD Jennifer Choi, MD Kelly Nelson, MD, FAAD Lilia Correa, MD, FAAD, FACMS Mackenzi Wehner, MD, MPhil, FAAD

Michael Marchetti, MD Orit Markowitz, MD

Todd Schlesinger, MD, FAAD Jessica Sheehan, MD Muneeb Shah, DO Bruce Brod, MD, MHCI, FAAD Jeremy Bordeaux, MD, MPH Howa Yeung, MD, MSc

Rebecca Hartman, MD, MPH Sancy Leachman, MD, PhD Scott Walter, MD Susan Swetter, MD, FAAD

Major Initiatives/Accomplishments l  Planned a Cutaneous Lethal Melanoma Summit with experts to be held on February 26, 2024 in Washington, DC l  Development of rural health professional shortage area primary and secondary prevention policy PREVENTION COMMITTEE Members Include Elise A. Barish (Chair) Stan Adler Douglas Brodman Laura Ferris



TikTok filter created for Melanoma Awareness Month

Held one in-person meeting in March 2023 in conjunction with AAD and held one virtual meeting in September 2023

Alison Martin Kyleigh LiPira

James Merrick Robyn Burnes

Kim Watkins Miriam Kadosh

Diana Olvera — Dermatology Interest Group Association (DIGA) representative

Major Initiatives l  Meets monthly to identify, define and implement the MRF’s prevention and awareness priorities. l  Developing a process for updating and gamifying the SunAWARE curriculum


Education, Awareness and Prevention

MELANOMA AWARENESS AND PREVENTION Digital and print campaigns dedicated to cutaneous melanoma prevention and awareness of the rare melanoma subtypes, including ocular, mucosal, pediatric and acral lentiginous. Each campaign is intended to empower patients and caregivers while increasing awareness of each melanoma subtype.

#OutOfTheShadows Mucosal melanoma awareness campaign held each March. The #OutOfTheShadows campaign raises awareness of this rare melanoma subtype that represents

less than 2% of all melanoma diagnoses each year. Read the story of a mucosal melanoma patient at:

#SpotTheDog Pediatric and AYA melanoma awareness campaign held each September during Pediatric

#GetNaked Cutaneous melanoma early detection and prevention and rare melanoma subtype awareness campaign held each May during Melanoma Awareness Month. The campaign urges everyone to #GetNaked once a month for a self-skin exam at home and have an annual full body exam by a board-certified dermatologist. The 2023 campaign featured:

Cancer Awareness Month. The #SpotTheDog campaign raises awareness of and promotes sun safety for parents, pediatricians and dermatologists. Read more here: melanoma-awareness-month/

#EyeGetDilated Ocular melanoma awareness campaign held each November. The #EyeGetDilated campaign raises awareness of this rare melanoma subtype and overall

Teddi Mellencamp Arroyave, a TV personality, wellness coach, host of top-rated podcast “Two Ts in a Pod,” and melanoma patient and advocate. Read her patient journey blog here:

eye health and encourages all to receive an annual dilated eye exam. Read the story of an ocular melanoma survivor at:


Education — Rare Subtypes

Adolescent and Young Adult (AYA) Retreat September 28–October 1, 2023 in the Upper Peninsula of Michigan Bringing together seven young adults from across the country and Canada to connect with one another on a wilderness retreat at the Walden Institute. Topics included: l  Family and relationships l  Careers and finding meaning l  Fertility

Eyes on a Cure: Ocular Melanoma Patient and Caregiver Symposium (Tampa, FL) March 31–April 2, 2023

5 Rare Melanoma “Ask the Expert” Webinars Were Held l  Speak for Melanoma: Engaging the Melanoma Community in Advocacy at Home and With Policymakers l  Identifying Mucosal Melanoma Through Routine Exams l  Current Treatments and the Future of Research for Mucosal Melanoma l  Shared Vision of Progress and Hope — a Review of the CURE OM Global Science Meeting l  Newly Approved Liver-Directed Treatment for Uveal Melanoma

85 attendees. Talks included: l  Ocular Melanoma Past, Present, Future

l  Prognostication and Ocular Care After Primary Treatment l  Advance Care Planning and Managing Anxieties for Patients and Caregivers l  Current Clinical Trials for Metastatic Uveal Melanoma

Scan this QR code to hear directly from the young adults who attended this retreat.




In my last congressional meeting of the day, the emotions of the week began to sink in. With tears in my eyes, I shared my story with Minnesota Representative Betty McCollum’s office. One of Representative McCollum’s staffers thanked me for taking the time to meet with them and share my story. She said that when they introduce proposed bills to the House floor, our stories are the ones that make the biggest impact. Our stories matter. — Jenn Schultz “ 31 Advocates 14 States 38 Hill Meetings ”

Key Advocacy Priorities

Prevention Finalize FDA proposed rule to ban tanning bed use by minors Access l  Permanently eliminate geographic restrictions and originating site requirements for telehealth use l  Provide for a study examining the waiver of state licensure requirements and use of out-of-state telemedicine by Medicare beneficiaries during the pandemic l  Remove cost barriers to skin cancer screenings at the state level Research l  $40 million for Congressionally Directed Medical Research Programs (CDMRP) Melanoma Research Program (MRP) l  Cover the ancillary costs associated with participation in clinical trials and offer digital health devices to trial participants without violating anti-kickback statutes l  Support $50.9 billion for NIH, $9 billion for NCI, $6 million for CDC Skin Cancer Prevention Program and include melanoma language under NCI in LHHS Committee Report




Over 180 MRF advocates contacted their members of Congress and urged them to pass an appropriations package to protect melanoma research before the end of the fiscal year. EMAIL AND LETTER-WRITING CAMPAIGN

On November 9 and 10, the Global Melanoma Coalition convened in Philadelphia. Attendees representing 10 countries met to discuss the annual May awareness campaign as well as equitable access to emerging melanoma testing and treatment. Members of the coalition had the pleasure of hearing from noted leaders in melanoma such as Dr. Jeffrey Weber on topics ranging from the emerging science of the melanoma vaccine to global access and advocacy for genomic testing.


l  Florida introduced No Copay legislation to provide no-cost skin cancer screenings l  Inclusion of telehealth legislative asks in CONNECT for Health Act of 2023 l  Movement of FDA tanning bed issue to June Unified Agenda with anticipated final ruling in December 2023 l  Governor Greg Abbott of Texas declared May Melanoma Awareness Month thanks to engagement with MRF patient advocates


Donor Support and Events


16 Cities Announced New 2024 Event in Miami, FL

5,939 Total Participants 357 Total Teams $1,145,900 13 Cities Raised Over

Check out the 2023 Miles for Melanoma Season Recap Video.

Hosted Skin Screenings


Donor Support and Events


At each gala, we honor melanoma clinician-scientists, leaders in the corporate community who are promoting awareness and prevention and recognize courageous melanoma patients. We consider these events as a platform to educate the public about the risks of melanoma and to share important prevention messaging through our awareness campaigns. Two galas were held in 2023, raising more than $1.4 million for melanoma research, education and advocacy.

22nd Annual New York Gala featuring Emcee Andy Cohen and Courage Awardee and 2023 #GetNakedSpokesperson Teddi Mellencamp October 26th Honorees l  Humanitarian Awardee: Udai S. Kammula, MD, FACS l  Excellence in Prevention Awardee: Samer Jaber, MD l  Courage Awardees: Teddi Mellencamp and Chris White

12th Annual Denver Gala September 21st

Honorees l  Excellence in

Prevention Awardee: Zeina Dajani, MD l  Inaugural Advocate Awardee: Stacey Sepp l  Courage Awardees: Crystal Crowley,

Andy Cohen and Teddi Mellencamp

Mary Harty-Prather and Keith Woolley

2023 New York Gala Event Co-Chair Dr. Michelle Henry and Dr. Samer Jaber

Crystal Crowley


Donor Support and Events


Your Next Step Is the Cure Hosted by CURE OM Steering Committee members Linda O’Brien and Bernadette Boyle, the CommUNITY Fundraiser raised $15,000 for the CURE OM initiative. Jam for Cam In November 2023, Jam for Cam, hosted by Sigma Nu fraternity at the University of Georgia, raised $55,000 for the MRF.

#GetNakedJax In October 2023, advocate and melanoma survivor Jason Sessions hosted the 3rd Annual #GetNakedJax event in Jacksonville, Florida. Over 200 guests attended and more than $180,000 was raised to support a research grant for Women in Science.

In addition to our highlighted community fundraisers, we are proud to support over 40 community-driven initiatives across the nation. Interested in hosting your own fundraising event? Please contact for more information.


Donor Support and Events


Thank you to Cabana Life who served as the National Apparel Partner for the Miles for Melanoma 5K series. Founded by a melanoma survivor, their employees enthusiastically joined all 16 events and provided stylish sun protection to every participant. They also participated in Melanoma Awareness Month and Giving Tuesday through giveback campaigns. Neutrogena has been a longtime partner and has donated almost $1M! This year they served as the Miles for Melanoma National Prevention Sponsor, supported the Dermatology Advisory Council meeting, participated in Melanoma Awareness Month, served as the corporate match partner on Giving Tuesday and donated a dollar from the sale of each co-branded sunscreen bottle.

During Melanoma Awareness Month, EltaMD launched a social media campaign with Bravo host Andy Cohen to remind people to #GetNaked for their annual skin- checks. For each comment on the Instagram post, EltaMD donated a bottle of sunscreen to the MRF, resulting in over 2,000 bottles that were handed out at various CommUNITY fundraisers. Additionally, they supported the Dermatology Advisory Council meeting and served as a top sponsor at the NYC Gala. New partner highlight! Replimune was a new partner this year and they made quite a splash by supporting the Advocacy Program and Hill Days, Ask The Expert Webinar Series and the NYC Gala. Additionally, they joined other dedicated CURE OM industry partners — Aura, Castle, Delcath, Ideaya, Immunocore and TriSalus — at the Annual CURE OM Science Meeting in November.


Donor Support and Events


The family and friends of OM patient Lindsay Zubeck have been spearheading fundraising efforts over the past two years to fund a research grant in her honor to advance treatment for all patients with metastatic uveal melanoma not restricted by HLA type. The second annual fundraising event was held in June 2023 with record-breaking attendance.

The Peer-Review Grant Selection Committee selected the proposal by Bruce Ksander, PhD (the Schepens Eye Research Institute), Rizwan Haq, MD, PhD (Dana-Farber Cancer Institute) and Margarete Karg, PhD (Massachusetts Eye and Ear Infirmary), focused on the identification of molecular pathways that drive uveal melanoma metastasis.



treatment and prevention. The success of the fund reinforces our confidence in making meaningful strides towards a future free of melanoma, and we extend our heartfelt gratitude to everyone who has joined us in this crucial endeavor. Together, we are forging a legacy of progress in the fight against melanoma. Participating in the Legacy of Progress Endowment Fund is easy. You can include the MRF in your will, establish a charitable remainder trust, designate us as a beneficiary of your retirement account or life insurance policy, donate stock

On November 1, 2023 the Legacy of Progress Endowment Fund was launched, marking a significant milestone in our fight against melanoma. This pioneering endeavor embodies our unwavering commitment to advancing melanoma research and ensuring a legacy of progress for generations to come. Due to an incredible outpouring of support, we are thrilled to share that we are well on our way to making our $10M goal. This overwhelming response underscores the shared commitment and urgency in advancing melanoma research. The generous contributions from individuals, organizations and communities are a testament to the collective belief in our mission to drive groundbreaking solutions for melanoma

and/or make a cash donation.

We invite you to watch this brief video featuring Endowment Fund Founders, as they share the immense value of this initiative.




The MRF is grateful to Alison Martin, MD, who served on the Board for eight years and as Vice Chair for a year; Glenn Merlino, PhD, who served on the Board for six years and as Scientific Advisory Committee (SAC) Co-Chair for five years; and Cheryl Stratos, who served on the Board for 11 years, as Secretary for three years and as Vice Chair for two years. Their collective leadership, commitment to advancing hope for the melanoma community and dedication to our mission has been invaluable for the MRF. We thank Alison, Glenn and Cheryl for tirelessly steering the Foundation to better enable progress for the melanoma community and look forward to their continued support.

Kristina Baum joined the MRF Board of Directors in January 2023. Kristina has been a longtime advocate for the melanoma community and is an accomplished communications professional with roles in both the private sector and the highest branches of the government. Kristina is a three- time cancer survivor and advocates for those battling melanoma, specifically before the FDA on clinical trial design and medical countermeasures to brain metastases. Ashani Weeraratna, PhD, joined the MRF Board of Directors in January 2024. Ashani is an E.V. McCollum Professor of Oncology and Chair, Department of Biochemistry and Molecular Biology at the Johns Hopkins Bloomberg School of Public Health. Her research interests include melanoma, aging tumor microenvironment, metastasis and therapy resistance, and she has served on the MRF’s SAC. Ashani will become SAC Co-Chair in January 2024.

Alison Martin, MD

Kristina Baum

Glenn Merlino, PhD

Ashani Weeraratna, PhD

Cheryl Stratos




Miriam Kadosh, MSW, LCSW Director of Patient Engagement and Education THE MRF WELCOMES TWO NEW PROGRAM LEADERS:

Douglas Brodman Chairman of the Board Michael Atkins, MD Scientific Advisory Committee Co-Chair Ashani Weeraratna, PhD Scientific Advisory Committee Co-Chair

Jill Wrobel Treasurer

Kristina Baum

Tom Westdyk Investment Committee Chair

Laura Ferris, MD, PhD Dermatology Advisory Council Co-Chair Elise A. Barish Prevention Committee Chair

Jocelyn Perkins Director of Finance

Stan Adler

Kyleigh LiPira MRF CEO

Learn more about the Board of Directors at:

Meet the entire staff at:




MELANOMA RESEARCH FOUNDATION 1420 K Street NW, 7th Floor Washington, DC 20005 202.347.9675 or 800.673.1290

Find us online: CureMelanoma Melanoma.Research.Foundation CureMelanoma CureMelanoma @curemelanoma company/259657

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