MRF Stewardship Report Volume 5 FINAL

Fall 2021 / Volume 05 Stewardship Report

HOPE CHANGES EVERYTHING YEARS

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.

25th Anniversary

Diana started the Melanoma Research Foundation to give hope to others in a time when there was very little hope for melanoma patients. She was inspired by her own journey, of course, and the absence of treatments that were available to her, but in the end it totally turned to others. It was pretty remarkable. — Jeff Ashby, Diana’s husband “ ”

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,

Diana and Jeff Ashby

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-five years later, her legacy lives on as the MRF has grown into the largest independent organization devoted to melanoma, funding more than $20 million in life-saving research and offering a powerful voice for the 1.3 million Americans living with melanoma.

Douglas Brodman, MRF Board Chair

Table of Contents

Research ...........................

COVID-19 Response ....

2

12

Melanoma Awareness Month ........

Rare Subtypes Research ...........................

5

13

Education and Awareness ..............

Partnerships and Supporters ............. 15

7

Rare Subtypes Education and Awareness ..............

Blending Mission and Family: The Silverstein Family Gift ........................

9

16

Advocacy ..........................

Community .....................

10

17

1

Research

ACCELERATING RESEARCH: GRANTS From basic science to clinical trials, from medical students to established investigators

Peer-reviewed research grants awarded in 2020/ 2021 supporting the investigator spectrum from emerging to established scientific investigators

$20.1 MILLION IN GRANT FUNDING TO DATE HAS SUPPORTED:

18

80 Medical Student Awards to date

204

22

Publications

Clinical Trials

89 Career Development Awards to date

Grants with new collaborations

409

83

Presentations

33 Established Investigator Awards to date

Grants with new funding

6

51

Patents

10 Team Awards to date

1998

2021

Over $20.1 million in research funding awarded through 217 grants to date.

The MRF awards its first research grant.

TIMELINE

2

Research

MRF PARTNERS WITH LEADERS IN MELANOMA

Society for Melanoma Research (SMR) The largest international melanoma organization

American Society of Clinical Oncology (ASCO) International clinical oncology network

The MRF sponsors annual investigator awards (11 to date) and a scientific satellite symposium. October 28, 2021

Kicked off the meeting with the annual MRF Breakthrough Consortium involving investigators from 22 centers of excellence in melanoma focused on translational research collaborations. June 4–8, 2021

American Association for Cancer Research (AACR) First and largest cancer research organization

MRF-funded research projects were presented at Annual Meeting; an MRF grant recipient presented the Presidential Address. April 27–28, 2021

3

Research

STRENGTHENING AND BUILDING THE FIELD OF MELANOMA RESEARCH Hosted 25th anniversary blog series to highlight MRF-funded researchers, including:

Kieran Smalley, PhD Melanoma Field Needs a Pipeline of Talented Young Scientists

Samantha Black Improving Melanoma

Richard D. Carvajal, MD Encouraging Progress in the Uveal Melanoma Field Screening Education for Primary Care Providers Serving Patients with Skin of Color

Genevieve Boland, MD, PhD and Keith Flaherty, MD The Impact of Research on Improving Patient Outcomes

Douglas B. Johnson, MD, MSCI Managing Immunotherapy- Related Side Effects

LATEST PUBLICATION IN CLINICAL CANCER RESEARCH : The State of Melanoma: Emergent Challenges and Opportunities

UPCOMING MEETINGS: • PD1/PDL1 resistance: a workshop bridging researchers in lung, kidney and melanoma cancers to design clinical trials for patients for whom initial anti-PD1/PDL1 therapies have failed • Melanoma brain metastases: the third MRF-sponsored summit will continue to build upon the foundation of the previous two summits resulting in strategies published in major journals • Defining pre-diagnostic tools for pigmented skin lesions

1998

2021

FDA approves IL-2 as the first immunotherapy for metastatic melanoma.

16 FDA-approved treatments are available, with more currently in development.

TIMELINE

4

Research RARE SUBTYPES

GRANTS AND AWARDS

LAUNCH OF VISION REGISTRY MAY 2021 WWW.VISIONREGISTRY.ORG

Medical Student Awards

2

Current Career Development Award application cycle includes specific awards for research focused on pediatric melanoma and mucosal melanoma. Career Development Awards Latest grant cycle funded two Medical Student Awards for acral lentiginous melanoma (ALM) and mucosal melanoma.

A historic patient-reported ocular melanoma registry, uniting OM patients, caregivers and researchers around the world in the search for a cure. VISION will reveal new patterns, potential causes, treatment effects and outcomes to advance OM research.

2016 At CURE OM’s Eyes on a Cure Patient Symposium, researchers and patients identify a patient-reported registry as a critical need to advance OM research.

CURE OM launches the global, patient- reported VISION Registry uniting OM patients and researchers across the world.

2021

TIMELINE

5

Research RARE SUBTYPES

POSTERS AND PUBLICATIONS

THE LATEST ON UVEAL MELANOMA RESEARCH AND CLINICAL TRIALS: “Updates from the Cure Ocular Melanoma (CURE OM) Science Meeting” published in Clinical Cancer Research in January 2021.

“Uveal Melanoma Patient Attitudes Towards Prognostic Testing Using Gene Expression Profiling” poster presented at the Association for Research in Vision and Ophthalmology (ARVO). The poster presented data from more than 200 responses to a patient survey sponsored by CURE OM and Castle Biosciences.

2011 CURE OM founded by OM patient Dr. Gregg Stracks and his wife, Dr. Sara Selig.

CURE OM has awarded over $2.1 million in ocular melanoma research funding and launched the historic global patient-reported VISION Registry.

2021

TIMELINE

6

Education and Awareness

NEW EDUCATIONAL MATERIALS AND WEBPAGES FOR MELANOMA PREVENTION AND EARLY DETECTION

DONATE

PATIENTS & CAREGIVERS MELANOMA EDUCATION RESEARCH & SCIENCE ADVOCATE HOW TO HELP ABOUT US

SELF SCREENING GUIDE

YOU are the most likely person to spot your melanoma. Melanoma can occur on any area of the skin, but for men, the chest or back is the most likely area; for women, it is often the legs.

Examining your skin once a month is easier than ever: just ask your Amazon Alexa or Google Assistant to “open skin check” for step-by-step instructions. Prefer to do yours ‘old school’? Use this guide to ensure you check your entire body. Consider creating a monthly Melanoma Monday reminder on your phone or kitchen calendar. To perform your skin check, you’ll need to be in front of a large mirror and have a handheld mirror so you can see hard-to-see places. You will also need a comb.

DONATE

SEARCH

PATIENTS & CAREGIVERS

MELANOMA EDUCATION RESEARCH & SCIENCE ADVOCATE HOW TO HELP ABOUT US

Creation of new Melanoma Prevention webpages with updated curriculum and content for Youth, Teens and Young Adult, and Adult Prevention.

Prevention Melanoma Prevention

Nearly 90% of cutaneous melanomas are related to excess ultraviolet (UV) exposure. 1 This is a major risk factor that you can prevent over the course of your lifetime. Can Melanoma Be Prevented?

However, some risk factors for cutaneous melanoma cannot be prevented:

Additionally, some risk factors for ocular melanoma also cannot be prevented:

Moles

Choroidal nevi**

Lighter physical features

Ocular/oculodermal melanocytosis**

STEP 1 Look at your face, including your nose, lips, mouth and behind your ears.

STEP 2 Check your scalp, using a comb to part your hair. If you don’t have much hair, check your entire scalp very thoroughly.

STEP 3 Check the front and back of your hands, in between your fingers and your fingernails.

STEP 4 Bend your elbows to check your upper arms and armpits.

Family history of melanoma

Familial uveal melanoma**

Weakened immune system caused by:

Moles

Xeroderma pigmentosum*

Lighter physical features such as eye color and/or fair skin that sunburns or freckles easily

Personal or family history of cancer**

*Visit the American Cancer Society for additional details about the condition and its relationship with cutaneous melanoma. 2 **Visit the National Comprehensive Cancer Network’s Uveal Melanoma Guidelines for additional details about the condition and its relationship with ocular melanoma. 3

Melanoma prevention is best approached in two ways:

1

2

Primary prevention is de fi ned as reducing or limiting exposure to UV radiation to prevent melanoma from occurring.

Secondary prevention is de fi ned as detecting melanoma in its earliest stages through regular screenings. 4

Click on a box below to learn more about PREVENTION and EARLY DETECTION of cutaneous, ocular, and mucosal melanomas at every age!

STEP 6 Use a hand mirror to check the back of your neck and your entire back.

STEP 7 Continue using a hand mirror to check your buttock, genitals and the back of your legs. Finish by checking the soles of your feet, between your toes and your toenails.

FIND A MELANOMA MATE If it’s too difficult to check those hard-to-see places on your own, find a Melanoma Mate — your partner, a roommate or close friend — to help check those areas with you each month. Be sure to return the favor during their skin check.

STEP 5 Focus on your neck, chest and upper body; women, check between and underneath your breasts.

Youth Learn more about sun safety for babies, infants and school-age children!

Teens & Young Adult Teens and young adults can enjoy life and still practice sun safety habits!

Adult It’s never too late to learn about melanoma prevention!

Citations:

US Department of Health and Human Services. The Surgeon General’s Call to Action to Prevent Skin Cancer. Washington (DC): O ffi ce of the Surgeon General (US); 2014. Skin Cancer as a Major Public Health Problem. Available from: https://www.ncbi.nlm.nih.gov/ books/NBK247164/ American Cancer Society, https://www.cancer.org/cancer/melanoma-skin-cancer/causes-risks-prevention/risk-factors.html National Comprehensive Cancer Network: Uveal Melanoma Guidelines, https://www.nccn.org/professionals/physician_gls/pdf/ uveal.pdf

1.

2. 3.

Suppa M, Daxhelet M, del Marmol V. Dépistage du mélanome [Melanoma secondary prevention]. Rev Med Brux. 2015;36(4):255-259. 4.

Content last updated June 2021.

The Melanoma Research Foundation (MRF) is leading the melanoma community to transform melanoma from one of the deadliest cancers to one of the most treatable through research. education and advocacy.

The Melanoma Research Foundation is a 501(c)(3) non-profit organization.

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CONTINUED EXPANSION OF ONLINE EDUCATION AND SUPPORT RESOURCES l  Over 50 webinars now available in the MRF Education Institute covering topics related to all forms of melanoma. l  COVID-19 Resource Center regularly

updated with information on COVID-19 and melanoma, treatment and telehealth, vaccine information for those with cancer, and more.

1996 Early educational materials referenced a brand new resource for melanoma patients and caregivers: “The Net.”

MRF education and support resources reach millions of people each year through events, webinars, online and print resources and even videos in Times Square, NYC.

2021

TIMELINE

7

Education and Awareness

HOSTED THREE VIRTUAL PATIENT SYMPOSIA THROUGH MAY IN PARTNERSHIP WITH LEADING CANCER CENTERS.

HOSTED “EXPLORING SURVIVORSHIP FOR THE MELANOMA PATIENT” FACEBOOK LIVE IN MARCH, REACHING OVER 1,800 USERS.

SEATTLE CANCER CARE ALLIANCE

THE OHIO STATE UNIVERSITY COMPREHENSIVE CANCER CENTER — THE JAMES

PENN MEDICINE ABRAMSON CANCER CENTER

Yearly symposia for cutaneous, ocular and pediatric melanoma, and a growing on-demand webinar library covering more than 50 topics on all forms of melanoma.

MRF hosts first cutaneous melanoma patient and caregiver symposium.

2008

2021

TIMELINE

8

Education and Awareness RARE SUBTYPES

EYES ON A CURE: PATIENT AND CAREGIVER GLOBAL SYMPOSIUM HELD ON NOVEMBER 19–21, 2020 l  Over 400 participants from 10 countries l  Live presentations from the US, UK, Canada, Australia and New Zealand

NEW #EYEGETDILATED CAMPAIGN LAUNCHED IN NOVEMBER 2020

Encouraged everyone to schedule a dilated eye exam and share photos from their visit to increase awareness. MRF partner CROWNS AGAINST CANCER went in costume as film and fairy-tale heroes to increase awareness.

EYES ON A CURE: MINI SUMMIT HELD ON APRIL 29, 2021

INAUGURAL #OUTOFTHESHADOWS MUCOSAL MELANOMA AWARENESS CAMPAIGN LAUNCHED IN FEBRUARY 2021

l  More than 150 registrants l  Speakers and presentations from five institutions

Featured inspiring patient and caregiver stories sharing experiences of a rare disease that can be uncomfortable to talk about.

The MRF introduces #GetNaked , its first awareness campaign for cutaneous melanoma.

With the addition of #EyeGetDilated , #SeeSpotSeeDoc and #OutOfTheShadows , all forms of melanoma have a nationwide annual awareness campaign.

2014

2021

TIMELINE

9

Advocacy

VIRTUAL ADVOCACY DAYS HELD MARCH 1–5, 2021

More than 1,300 advocates engaged with the MRF to support 2021 advocacy efforts.

125 advocates participated in briefings.

MRF Advocates sent over 1,950 emails to legislators encouraging their support for the MRF’s advocacy efforts encouraging their support for the MRF’s advocacy efforts.

Advocates held 68 meetings with lawmakers representing 22 states.

ADVOCATE NATIONAL OPINION SURVEY RECEIVED OVER 1,450 RESPONSES FROM ALL 50 US STATES, REPORTING: l  65% of respondents agreed that the government should focus spending on increasing affordability of melanoma screenings and care

l  46% of respondents believe it is very important for the government to fund life-saving melanoma research l  Nearly 32% of respondents report relying on public health insurance such as Medicare/Medicaid l  Over 6% reported being uninsured

7

Published seven educational webinars and trainings on melanoma advocacy.

2009 MRF successfully advocates to make melanoma research eligible in the competitive Congressionally Directed Medical Research Program (CDMRP).

After securing dedicated melanoma research funding in 2018, MRF advocates triple the amount to $30 million in the FY21 Appropriations bill.

2021

TIMELINE

10

Advocacy

LAUNCHED THE ADVOCATE, A QUARTERLY NEWSLETTER ON THE MRF’S ADVOCACY PROGRAM

MRF ADVOCACY IN THE NEWS WGN Chicago featured a story on skin cancer in the military and MRF advocacy efforts to secure additional funding.

2021 POLICY HIGHLIGHTS l Secured $30 million in FY21 Federal Appropriations

–  Funding the Congressionally Directed Medical Research Program (CDMRP) and life-saving research through its Melanoma Research Program (MRP). l  Advocated for $10.8 billion increase in federal appropriations, specifically: –  $7.6 billion in NCI funding to improve cancer research –  $3.2 billion in NIH funding for biomedical research l  Called for increasing FY22 CDMRP funding to $40 million l  Supported a broad policy agenda, including: –  Congresswoman Carolyn Maloney’s (D-NY) letter urging the FDA to prohibit minors from using tanning beds –  Medicare Part D Prescription Coverage –  Access to Biomarker Testing, the Affordable Care Act (ACA) and affordable skin screenings.

ADVOCACY DAYS

California becomes first state to ban indoor tanning by minors under 18.

42 states have banned or restricted indoor tanning by minors and across the US. MRF advocates continue to rally support for Rep. Carolyn Maloney’s letter to the FDA urging a nationwide ban.

2012

2021

TIMELINE

11

COVID-19 Response

NOTING A CRITICAL NEED IN THE MELANOMA COMMUNITY, PROVIDED FUNDING FOR TWO COVID-19 REGISTRIES ON THE TOPICS OF: l  The impact of COVID-19 on melanoma diagnosis and initial treatment, under the aegis of the NCI Melanoma Preventative Working Group l  Comparing how melanoma treatments affect COVID-19 infection and patient outcomes

“MELANOMA AND COVID-19” SECTION INCLUDED IN THE CCR PUBLICATION The State of Melanoma: Emergent Challenges and Opportunities

CONTINUED IMPACT OF COVID-19 PANDEMIC ON US MELANOMA PATIENTS (JANUARY 2021) Second COVID-19 survey distributed to the melanoma community, with topics related to access to care and social-emotional effects of the shutdown including loneliness, stress and anxiety. l 221 responses from 44 US states. l  75% reported access to telephone or videoconference appointments with a healthcare professional during the pandemic. l  85% reported increased anxiety caused by the pandemic. l  68% are experiencing difficulty staying connected with family and friends (compared to 52% in the first survey). l  38% reported disruptions to care (compared to 85% in the first survey).

12

Melanoma Awareness Month

#GETNAKED: THE MRF HAS SKIN IN THE GAME 2021 #GetNaked campaign features two melanoma survivors with close connections to the MRF:

VIRTUAL MILES FOR MELANOMA

l  Month-long virtual event uniting runners and walkers across the US l  Participants exceeded

l  Cassie B., MRF Senior Advocacy Officer l  Darren R., spouse of MRF staff member

$50,000 fundraising goal by 36%, raising a total of $68,235!

New app introduced to record race times, show top finishers on the leaderboard and more

2021 BE BRAVE CAMPAIGN LAUNCHED BY COOLIBAR, THE MRF’S NATIONAL APPAREL PARTNER l  Featuring inspiring stories of melanoma patients and survivors l  Limited edition “Be Brave” apparel and accessories, with 100% of proceeds donated to the MRF

13

Melanoma Awareness Month

#STICKIT2MELANOMA

WEEKLY ASK THE EXPERT FACEBOOK LIVE SESSIONS SPONSORED BY:

l  For every person who takes the pledge to schedule a dermatologist skin exam, DermTech will donate $5 to their nonprofit partners including the MRF, up to $1 million! l  DermTech will donate an additional $5 for every person who challenges a friend to join them in taking the pledge

ONLINE IMPACT l  141 social media posts related to Melanoma Awareness Month. l  12 patient and caregiver guest blogs published.

l  Over 273,000 post impressions on Facebook, 74,000 on Instagram. l  Facebook Live engagement rate topped 20%. l  Facebook fundraisers raised over $43,000 in May.

THANK YOU TO OUR MELANOMA AWARENESS MONTH SPONSORS!

14

Partnerships and Supporters

WELCOME TO OUR NEW 2021 CAUSE MARKETING PARTNERS

THANK YOU TO THOSE WHO USED THEIR PLATFORMS TO SHARE SPECIAL MELANOMA AWARENESS MESSAGES!

Dayanara Torres, former Miss Universe, actor, author and melanoma survivor

Raheem Mostert, San Francisco 49ers running back and MRF supporter

Karolina Jasko, Miss Illinois 2018 and melanoma survivor, and Christine Sams, Mrs. West Virginia International 2021 and melanoma survivor

Erik Jones, NASCAR driver and MRF supporter

Katonya Breaux, founder of Unsun Cosmetics and MRF supporter

15

The Silverstein Family Gift BLENDING MISSION AND FAMILY:

A six-figure gift from MRF Board Member Steve Silverstein blended the things he values most in life — his commitment to the MRF and admiration of his wife and daughters — to create the Silverstein Family Research Challenge grant. With the specific intent of supporting women in science, this two-year grant is matched by the MRF and will provide funding for a post- doctorate fellow interested in beginning a research career focused on melanoma. Silverstein and his family value the importance of advancing research, noting “Our family is thrilled to be able to support continued research for a cure to melanoma through the MRF. The focus on Women in Science is especially rewarding and meaningful as so many women are coming into the field and making a significant impact. It is wonderful that the MRF would embrace this novel and important research grant opportunity.”

To learn how you can support the MRF with a donor-directed gift, please contact MRF Chief Development Officer Susan Vogel at svogel@melanoma.org.

16

Community

MRF BOARD OF DIRECTORS UPDATE

On April 1, 2021 the MRF announced Douglas Brodman as the new Chair of its Board of Directors. An accomplished senior executive and stage 4 melanoma survivor, Brodman succeeds Steven Silverstein, who served as Chair since 2013 and will now take on the role of Vice Chair.

Douglas Brodman

Elise Barish

Also on April 1, Elise Barish joined the MRF Board of Directors. l  Barish has been closely involved with the MRF since 2009, when her brother, Dr. David Arbutyn, was honored with a Courage Award at the MRF New York Gala. l  She initiated the MRF Denver Gala in 2012 and remains an active committee member each year.

It has been an incredible honor to have served as Board Chair during such a transformational era for the melanoma community. When I was diagnosed with stage 4 melanoma 17 years ago, there was only one FDA-approved treatment. Today, thanks to innovative research advances like those made possible by the MRF, more than a dozen approved therapies are available to patients. Under Doug’s leadership, I am confident that we will continue to support the development of new, more effective treatments and, one day, a cure for melanoma. — STEVEN SILVERSTEIN “ ”

Steven Silverstein

17

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

Find us online: www.melanoma.org

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