Use our new friend, Spot, to help children check their skin for new or unusual spot or lesions. This tool will help young people become aware of their skin and aware of melanoma.
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
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4 2 0 E 2 0
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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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