MRF Stewardship Report Vol 4 - Fall 2020

Melanoma Research Foundation Stewardship Report

RESEARCH EDUCATION

RESEARCH RESEARCH RESEARCH

ADVOCACY

Fall 2020

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.

Table of Contents

Research ........................... 2

COVID-19 Response.... 9

Melanoma Awareness Month........ 12

Education ......................... 4

Advocacy........................ 6

Community..................... 13

Rare Subtypes CURE OM....................... 7

Partnerships................... 15

Rare Subtypes Pediatric.......................... 8

1

Research

GRANTS

Total grant funding now over $19.6 million and awarded through:

19 grants awarded to date in 2020, totaling $1,086,000 . Includes:

11

1

Team Award

MRF Breakthrough Consortium — Bristol-Myers Squibb Young Investigator Team Award

Team Awards

34

3

Established Investigator Awards

Established Investigator Awards

92

3

Career Development Awards

Career Development Awards

69

12

Medical Student Awards

Medical Student Awards

2

Research

PARTNERSHIPS AND PUBLICATIONS

Regular meetings of scientific leadership, including MRF Scientific Advisory Committee (SAC), Pediatric Melanoma Steering Committee, Mucosal Melanoma Steering Committee and CURE OM Registry Steering Committee.

Brain Metastases Summit 2.0 held in February 2018 prior to the National Cancer Institute Melanoma SPORE meeting at Moffitt Cancer Center; second publication entitled “Leptomeningeal Disease in Melanoma Patients: An Update to Treatment, Challenges, and Future Directions” recently published

in Pigment Cell and Melanoma Research. https://pubmed.ncbi.nlm.nih.gov/31916400/

Patients and caregivers join the grant review process for second year.

Second Brain Metastases Summit held prior to the National Cancer Institute Melanoma SPORE meeting at Moffitt Cancer Center. Planning is underway for a third summit to be held in 2021.

MRF BREAKTHROUGH CONSORTIUM (MRFBC) CONVENED ANNUAL MEETING VIRTUALLY DURING THE ASCO20 ANNUAL MEETING.

Following annual meeting at 2019 Society for Melanoma Research Meeting, white paper in development titled “The State of Melanoma: Emergent Challenges and Opportunities.”

3

Education

NEW MATERIALS AND DIGITAL EDUCATIONAL CONTENT DEVELOPED IN 2020:

ANIMATED MELANOMA PATIENT VIDEOS You and Melanoma: An Animated Patient’s Guide to Melanoma is a web-based educational program developed in partnership with Mechanisms in Medicine Inc. The MRF is committed to providing highly visual formats of learning for patients to improve their understanding, make informed decisions, and partner with their healthcare professionals for optimal outcomes.

Diagnosing Melanoma

Treating Melanoma

learned new information about melanoma prevention

said they would discuss video learnings with their doctor

97%

92%

Future topics include: Clinical Trials, Biomarker Testing, Survivorship, Genomics and Non-Invasive Testing

UPDATED MELANOMA CAREGIVER GUIDE

“SKIN OF COLOR &

MELANOMA” PAGE ON THE MRF WEBSITE

4

Education

FINDINGS INCLUDE

A MELANOMA SURVIVORSHIP NEEDS ASSESSMENT AND REPORT WAS CONDUCTED FROM OCTOBER 2019 – JANUARY 2020.

Approximately 50% of stage 4 respondents reported having a long-term survivorship plan in place

68% of stage 0-2 survivors experienced depression, compared with 59% of stage 3-4 survivors

KEY STATS

participated in the study through focus groups, interviews and an online survey

had participated in a clinical trial

909

42%

Nearly 50% of all respondents reported guilt about surviving

Stage 3-4 survivors reported current feelings of: l general worry (20%) l anxiety (23%) l nervousness (27%) l specific worries about long-term effects (31%)

of respondents identified as a patient/survivor, 10% as a caregiver

US states were represented, as well as several additional countries including Australia, New Zealand and the United Kingdom

90%

48

Fewer than 50% of survivors felt ready to transition from active treatment to post- treatment care

were cutaneous (skin) melanoma patients/survivors

69%

98%

were women

GOALS OF THE MRF SURVIVORSHIP INITIATIVE INCLUDE:

THE MRF SURVIVORSHIP INITIATIVE IS SUPPORTED BY

l  determining the types of support and resources that the melanoma survivor community wants and needs l  determining where opportunities for partnerships may exist l  identifying where the MRF can fill gaps

5

Advocacy

2020 ADVOCACY SUMMIT & HILL DAY

Being an advocate is more than going to events or signing petitions and making calls. Being an advocate for the melanoma community is giving your time, your heart, your soul and sweat to a cause that is embedded inside your heart. Not just for the people battling now but for the people who haven’t even joined the fight yet.

— MRF ADVOCATE

Partnered with 7 organizations to support COVID-19 relief packages focused on access to care

Over 100 volunteer advocates representing 19 states.

Awarded first Congressional Champion Award to Rep. Carolyn B. Maloney (D-NY) for her longstanding commitment to skin cancer prevention. Rep. Maloney has worked with the MRF to sponsor a House Letter urging an increase in Defense-funded melanoma research since 2009.

Laws passed in 25 states allowing students to bring sunscreen to school

SUPPORTED FEDERAL FUNDING FOR MELANOMA RESEARCH, INCLUDING:

l  $20 million for Department of Defense Congressionally Directed Melanoma Research Program (CDMRP) l  $2.6 billion research funding increase for National Institutes of Health (NIH) l  $296 million for National Cancer Institute (NCI) l  $4 million for Centers for Disease

https://youtu.be/rX6xpHkC_Lw

Control and Prevention (CDC) Skin Cancer Prevention activities

6

CURE OM RARE SUBTYPES

EXPANDED EDUCATION AND SUPPORT RESOURCES

INTERNATIONAL COLLABORATION: The founders of CURE OM , Ocumel Canada , OcuMel Irl and New partnership with Colorado Retina and the University of Denver to offer monthly support groups. In person meetings transitioned to virtual platform due to current social distancing regulations. An average of 15 people attend each meeting.

CURE OM Facebook Live information session with Co-Founder and Director Sara Selig, MD, MPH viewed over 1.8k times

OcuMel UK hosted a virtual discussion of COVID-19 and its effects on the OM community. Future meetings are planned to unite the OM community across the world.

New ocular melanoma webinars added to MRF Education Institute

Over 20 OM patients and caregivers have attended monthly online support groups facilitated by Thomas Jefferson University Oncology Social Workers

l Treating OM During COVID-19 l When a Parent Has Cancer l Advanced Care Planning l Adapting to Monocular Vision

7

Pediatric Melanoma RARE SUBTYPES

2020 PEDIATRIC MELANOMA SUMMIT EXPANDED TO WEEK-LONG VIRTUAL EVENT ON SEPTEMBER 21–25 l  Live Q&A with experts l  Online support resources l  Interactive activities & more!

YOU’RE INVITED! PEDIATRIC MELANOMA SUMMIT MELANOMA

SEPT. 21–25 Virtual Event

Melanoma.org/PedSummit2020 REGISTER TODAY!

SPOT THE DOG CAMPAIGN MASCOT INTRODUCED l  Adding to our library of parent-focused educational materials, the Spot campaign speaks directly to children and adolescents l  Spot teaches children about sun safety, skin checks and more through easy-to-understand instructions and illustrations

NEW AND EXPANDED

PARTNERSHIPS WITH CROWNS

AGAINST CANCER, LOVE YOUR MELON AND STUPID CANCER AT THE VIRTUAL PEDIATRIC MELANOMA SUMMIT

8

COVID-19 Response

IN RESPONSE TO THE GLOBAL SHUTDOWN CAUSED BY THE COVID-19 PANDEMIC, THE MRF LAUNCHED MULTIPLE PROGRAMS AND INITIATIVES TO SUPPORT MELANOMA PATIENTS AND CAREGIVERS.

#CANCERHASNOCURVE RESOURCE CENTER

l  Monthly webinars and virtual presentations focused on how the pandemic affects the melanoma community as well as general education topics l  New additions to the MRF Education Institute to facilitate online education and support while patients and caregivers are forced to stay at home

COVID-19 and Melanoma: What You Need to Know

Treating UM During COVID-19 : Update on Current Clinical Trials and Plans for the Future

Alexander Shoushtari, MD Memorial Sloan Kettering Cancer Center Ryan Sullivan, MD Massachusetts General Hospital Cancer Center, Harvard Medical School

Marlana Orloff, MD Thomas Jefferson University Hospital

Sapna Patel, MD MD Anderson Cancer Center

Recent Patient-Oriented Research Discoveries in Uveal Melanoma

Melanoma Epidemiology & Prevention

J. William Harbour, MD Sylvester Comprehensive Cancer Center of the University of Miami Miller School of Medicine

#CancerHasNoCurve Resource Center

Sancy Leachman, MD, PhD Oregon Health and Sciences University

Treating UM During COVID-19 : Update on Current Clinical Trials and Plans for the Future

COVID-19 and Melanoma: What You Need to Know

Therapy Resistance — Immune & Targeted

Adjuvant and Neoadjuvant Therapy

Melanoma Epidemiology & Prevention

Recent Patient-Oriented Research Discoveries in Uveal Melanoma

When a Parent Has Cancer

Ahmad A. Tarhini, MD, PhD Director, Cutaneous Clinical and Translational Research

Ryan Sullivan, MD Massachusetts General Hospital Cancer Center, Harvard Medical School

Therapy Resistance — Immune & Targeted

Adjuvant and Neoadjuvant Therapy

Advance Care Planning After a Cancer Diagnosis

H. Lee Moffitt Cancer Center

When a Parent Has Cancer

Advance Care Planning After a Cancer Diagnosis

Jean Hartford-Todd Duke University Health System

Alan Nguyen, LCSW The University of Texas MD Anderson Cancer Center

9

COVID-19 Response

SURVEY: IMPACT OF COVID-19 PANDEMIC ON US MELANOMA PATIENTS

COVID-19 has posed an incredible challenge to the cancer community. Now more than ever, melanoma patients and their care partners need the support and assistance of advocacy organizations. In June 2020, the MRF launched a survey in partnership with Save Your Skin Foundation (SYSF), a patient-led,

not-for-profit organization in Canada. Minor edits were made to make it specific to melanoma patients in the US and those with rare melanoma subtypes, allowing both organizations to compare the impact of the pandemic between the two countries.

KEY FINDINGS

Sponsored by Silver Level sponsors Merck & Pfizer, Bronze Level sponsor Novartis and Industry Start-Up Level Sponsor Castle Biosciences

Recently stopped checkpoint inhibitor treatment due to moderate to severe AEs. Not sure how I would do with COVID-19. Assume I am high risk so have elected to self-isolate. Very difficult to get information about COVID risks for people using or recently completed checkpoint inhibitors.

Approximately 85% of respondents reported some amount of disruption in treatment, care or follow-up appointments. Approximately 70% of respondents reported “a lot” or “some” difficulty connecting to one of their healthcare providers.

171

Responses

39

States

I am 80, my husband’s 92. There’s no way we’re going to a healthcare

identified as melanoma patients

148

provider until they test daily themselves and their workers.

Additional surveys and assessments will follow as the MRF continues to monitor and mitigate COVID-19’s impact on the melanoma community.

10

COVID-19 Response

APRIL 30 IN 30 l Hosted daily online activities in month of April to fundraise and stay active during quarantine, including fitness sessions, art and cooking classes and more l Participants raised over $18,000, funding 6 new medical student research grants

FUND THE FUTURE l Launched in July 2020, the Fund the Future campaign highlights leading melanoma researchers and how their work was made possible by MRF funding l Despite the challenges of COVID-19, the MRF’s 20+ year commitment to funding life-saving melanoma research continues l Campaign raised over $30,000 for research funding in first two months

11

Melanoma Awareness Month

l  Weekly “Ask a Dermatologist” hosted on Facebook Live, sponsored by DermTech l  Live webinar — Melanoma Clinical Trials: A Panel Discussion

l  Inaugural, month-long “virtual race” replaced

in-person events to adhere to public health guidelines while allowing communities to come together and celebrate Melanoma Awareness Month

l 2020 melanoma early detection campaign features Dr. Ellen Marmur, an NYC dermatologist and melanoma survivor l #GetNaked messaging shared via email, social media, web and on a video PSA in New York City, generating over 21,000 digital impressions and airing 5,460 times in Times Square.

12

Community

CommUNITY FUNDRAISER HIGHLIGHT

MILES FOR MELANOMA Beginning with month-long kick off in May 2020, Miles for Melanoma run/walks became virtual events. l Includes a week-long series of daily team challenges and “Fitness Crawl” activities leading up to the virtual 5k l Virtual skin health, sun safety and self-skin exam demonstrations conducted by local dermatologists and melanoma experts l Online Celebration Ceremonies recognize top fundraisers and teams, highlight stories from special guests and survivors, celebrations of the local melanoma community

Even in the most challenging times, dedicated MRF CommUNITY Fundraisers across the US continue to have a powerful and lasting impact on the melanoma community.

Claw Out Cancer

Warriors Against Melanoma l  Founded in 2014 by melanoma survivor Carola Gloyd

l  Organized by friends and family of 3-time melanoma survivor Addison Brush to increase melanoma awareness and encourage prevention l  Hosted during Melanoma Awareness Month and raised over $22,000

l  Raised over $150,000 through annual fundraising events like the annual trivia night – held virtually in 2020!

To date, participants have raised over $200,000 through virtual run/ walks across the United States

13

Community

GALAS

MRF BOARD OF DIRECTORS

Historic Firsts at MRF Galas

l Inaugural virtual galas supporting melanoma research and healthcare centers in Philadelphia, PA and San Francisco, CA l 9th Annual Denver Gala held virtually and raised over $168,000 – Inaugural Excellence in Prevention Award presented to Dr. Robert Dellavalle

Joe Fazio steps down from the MRF Board following 13 years of dedicated service. The MRF is grateful for Joe’s unmatched dedication and looks forward to continuing a strong partnership with the Susan Fazio Foundation for Melanoma Research, which he founded in 2006 in memory of his wife, Susan. Tom Westdyk and Jill Wrobel joined the MRF Board of Directors in January 2020 and September 2020, respectively. Doug Brodman named Vice Chair of the Board and Cheryl Stratos named Secretary at August 2020 meeting.

Coming soon!

Virtual Chicago Gala November 5, 2020 Virtual New York Gala December 3, 2020

Joe Fazio

A L D P H I

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J U N

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4 2 0 E 2 0

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A U

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P H

E V N E T

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G A A L

Tom Westdyk

M E L A N OM A R E S E A R C H F O U N DA T I O N

Jill Wrobel

14

Partnerships

EXPANDING INTERNATIONAL COALITIONS AND FORGING NEW PARTNERSHIPS TO BETTER REACH AND SERVE THE WORLDWIDE MELANOMA COMMUNITY.

Compiled and distributed COVID-19 and melanoma resources from 10 partner organizations

World Melanoma Awareness Campaign

NEUTROGENA AND CVS l Summer skin care give-back campaign in July 2020 DERMTECH l Weekly “Ask a Dermatologist” sessions broadcast live on the MRF Facebook page

ONCOSEC l Development of

l  Launched with a press release reaching a potential audience of 8.8 million l  Month-long social media campaign shared by partners across the world

co-branded clinical trials infographic

2020 Priorities

DEVILS BACKBONE l Official Beverage Partner of the MRF l Sponsored Sun Safety Facebook live presentation

l  Global web platform featuring international patient resources and links to member organizations l  Digital Assistants Project to improve guidance from Amazon Echo and similar devices when asked about melanoma- related topics l  Virtual Annual Meeting in conjunction with virtual SMR meeting in October 2020

15

THIS LIFE-SAVING WORK WAS MADE POSSIBLE BY YOUR GENEROSITY.

THANK YOU.

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

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