Melanoma Research Foundation Stewardship Report
Table of Contents
Mission Statement ................. 1
Research .................................... 2
Education .................................. 5
Advocacy ................................... 8
The Melanoma Research Foundation is committed to advancing lifesaving melanoma RESEARCH, increasing EDUCATION about the prevention, diagnosis and treatment of the disease and leading global ADVOCACY efforts to promote policies and initiatives that are most needed by 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.
145 GRANTS FUNDED since 1988
In 2017, six exceptional grants were selected in the following areas: l Melanoma prevention
THE MRF SPONSORS TWO AWARDS in conjunction with the Society of Melanoma Research (SMR) each year l YOUNG INVESTIGATOR AWARD l CHRISTOPHER J. MARSHALL AWARD for Studies on Signal Transduction and Melanoma https://www.societymelanomaresearch.org/awards
2017 PARTNERSHIP WITH BRISTOL-MYERS SQUIBB (BMS) established a new category of research funding l MRFBC-BMS YOUNG INVESTIGATOR RESEARCH TEAM AWARD to Advance the Field of Translational Immuno-Oncology
l Immunotherapy (3) l Signal transduction l Uveal melanoma
To date, funding from the MRF has resulted in:
Medical Student AWARDS
Established Investigator AWARDS
Grants with New Collaborations
Career Development AWARDS
Grants with New Funding Support
MRF ADDRESSES THREE RARE SUBTYPES OF MELANOMA
Established focus group and collected patient input to better address the needs of this community l Created list of mucosal melanoma treatment facilities l Launched biomarker clinical trial for patients with mucosal or acral lentiginous melanoma treated with a combination checkpoint inhibitor therapy
l Engage patients in research priorities l CURE OM successfully collaborated with the NCI to include uveal melanoma in The Cancer Genome Atlas Project that will result in publicly available information to accelerate research in uveal melanoma l Over the last five years, CURE OM has funded over $1,400,000 in ocular melanoma research and supported six leading OM researchers l Began development of patient-reported national ocular melanoma registry
l Created Pediatric Scientific Steering Committee to better serve the needs of this community l Uniting world class researchers to guide the direction of future initiatives and programming
MelanoMa ReseaRch Foundation
Cure OM Ocular Melanoma
MRF Breakthrough Consortium
MRF BREAKTHROUGH CONSORTIUM (MRFBC) Expanded to 20 member sites, doubling in size since its creation.
l Launched biomarker trial for patients with mucosal or acral lentiginous melanoma treated with combination checkpoint inhibitor therapy l Established new grant opportunity: The 2017 MRFBC-BMS YOUNG INVESTIGATOR TRANSLATIONAL IMMUNO-ONCOLOGY TEAM SCIENCE AWARD
University of Colorado Northwestern
of Chicago Ohio State University
University of Pittsburgh
California Pacific Medical Center
Dana Farber/Harvard Cancer Center Yale University Memorial Sloan Kettering Cancer Center Columbia University New York University University of Pennsylvania/ Wistar Institute Georgetown-Lombardi Comprehensive Cancer Center
University of California San Francisco
City of Hope
The Angeles Clinic and Research Center
University of California Los Angeles
M.D. Anderson Cancer Center
Moffitt Cancer Center
EDUCATIONAL EVENTS, MATERIALS AND ONLINE RESOURCES
HIGHLIGHTS l Eight multi-disciplinary speaker panels from leading melanoma centers l Inspirational patient panels, including Troy Aikman l Opportunity for patients, caregivers and health care professionals to build strong melanoma community networks
With over 300,000 hits to melanoma.org each month,
l Trained nearly 250 new Certified Melanoma Educators in 2017 l Ask a Nurse email program answered 200 patient and caregiver questions l Recorded presentations from four symposia were made available on the MRF website
the MRF seeks to meet the growing need for information and education for patients, caregivers and the general public.
NEW EDUCATIONAL MATERIAL
A new online education page offers information about the emerging field of adjuvant therapy and the current treatments available to patients.
l Electronic educational materials were downloaded over 55,000 times l Introduced a new Melanoma Patient Guide and a Kid’s Self-Screening Guide
l Melanoma Patient Guide was viewed over 20,000 times in first eight months l Fulfilled an average of 34 requests per month for free print materials
Melanoma Patient Guide GuidingYou atEveryStage
Who is Most Likely to Spot Your Melanoma?
2017 Pediatric Melanoma Summit featured a fashion show courtesy of Coolibar Sun Protective Clothing.
EIGHT SYMPOSIA IN 2017 | Total Attendance at eight events: 899
l Two symposia focused on rare subtypes of melanoma, ocular and pediatric. l Led by experts in the field and from centers of excellence around the country in partnership with the MRF.
5 May 12, 2017 ABRAMSON/UPENN PATIENT SYMPOSIUM Philadelphia, PA
1 February 11, 2017 CINCINNATI PATIENT SYMPOSIUM Cincinnati, OH
TOTAL ATTENDANCE: 250
TOTAL ATTENDANCE: 100 84 attendees, 16 speakers/volunteers/staff TOTAL ATTENDANCE: 82 67 attendees, 15 speakers/volunteers/staff TOTAL ATTENDANCE: 61 45 attendees, 16 speakers/volunteers/staff
6 May 22, 2017
TOTAL ATTENDANCE: 67 57 attendees, 10 speakers/volunteers/staff TOTAL ATTENDANCE: 121 109 attendees, 12 speakers/volunteers/staff TOTAL ATTENDANCE: 129 29 patients, 38 siblings, 53 adult family members, 9 speakers/volunteers/staff
2 March 10-11, 2017
UNC-CHAPEL HILL PATIENT SYMPOSIUM Chapel Hill, NC
CURE OM PATIENT SYMPOSIUM Washington, DC
7 June 10, 2017
3 May 6, 2017
SEATTLE PATIENT SYMPOSIUM Seattle, WA
THE JAMES/OHIO STATE PATIENT SYMPOSIUM Columbus, OH
8 September 8–10, 2017
PEDIATRIC PATIENT SYMPOSIUM Colorado Springs, CO
4 May 6, 2017
TOTAL ATTENDANCE: 89 77 attendees, 12 speakers/volunteers/staff
MD ANDERSON PATIENT SYMPOSIUM Austin, TX
“As a result of the symposium… I am more aware of the available resources.” I am more aware of new research and medical advances.” I am more aware of treatment options.”
98.6% of attendees either agreed or strongly agreed that:
l REGULAR SYMPOSIA SERIES (doesn’t include data from CURE OM Symposium or Pediatric Summit) l Approximately 57% of all attendees were patients
The MRF represents and supports patients fighting the deadliest form of skin cancer, three rare subtypes of melanoma, as well as those who care for them.
Mucosal l Established focus group to guide future of the program l Created list of mucosal melanoma treatment facilities l Produced first mucosal melanoma educational video l Expanded website content and developed “questions to ask your doctor” checklist l Provided over 300 hours of dedicated support to mucosal melanoma patients
Caregivers l Launched HealthUnlocked online support community for melanoma caregivers l Partnered with Thomas Jefferson University to develop online support group for ocular melanoma caregivers l Hosted 36 melanoma caregivers at the 2017 Advocacy Summit & Hill Day Ocular l Launched project to develop first of its kind patient-reported ocular melanoma registry – Engage patients in research – Improve patient outcomes – Gather comprehensive rare disease data – Accelerate development of more effective OM treatments l Hosted 6th Annual Eyes on a Cure: Patient and Caregiver Symposium l Increased membership of the CURE OM Patient and Family Steering Committee to 9 members
Pediatric l Created Pediatric Scientific Steering Committee
l Hosted Pediatric Melanoma Summit l United world class researchers to guide the direction of future initiatives and programming l Provided over 600 hours of specialized education and support to pediatric melanoma families
MRF Advocates for Smart Policies and Has Helped Secure $300 Million in Government Funding for Melanoma
Did you know?
The MRF is a core member of the National Council on Skin Cancer Prevention.
7th Annual MRF Advocacy Summit & Hill Day l MRF hosted 150 volunteer advocates from 22 states l In 2017, combined advocacy summit and ocular melanoma (OM) symposium to further incorporate the OM voice in our federal advocacy efforts
I was fortunate to find the MRF early after my diagnosis. Their belief and ability to see my need for knowledge and involvement has facilitated my physical and emotional healing. I decided to join Hill Day exactly one year post diagnosis and this exhilarating experience rewarded me with strength I felt I had lost. I learned more about the MRF and I was able to have open, heart-to-heart conversations with our legislators and aides. I came away with immense gratitude for our many freedoms and for the MRF’s steadfast mission to make MELANOMA NO MORE! LAURA WELLS Melanoma survivor and Hill Day advocate
8 to 80
The ages of our volunteer advocates
Ocular Melanoma participants
Meetings on the Hill to talk about increasing funding for the Peer Reviewed Cancer Research Program, tanning bed legislation
NEWS OUTLETS Conducted 18 interviews in a variety of news outlets, resulting in a total of approximately 78,838,491 impressions.
#GetNaked in Times Square
l Over 4 million people visited melanoma.org in 2017 l 18,000 site visits on Melanoma Monday (May 1)
melanoma.org 4 million visitors
with support from
with support from
It may save your life.
melanoma.org/GetNakedNYC #GET NAKED
l Reach of over 400,000 on social media
melanoma.org/GetNakedNYC #GET AKED
l Expanded award-winning #GetNaked campaign, including 2017 public service video ad in New York’s Times Square with 1.3 million impressions
l E-newsletter reaches over 50,000 monthly readers
2017 BY THE NUMBERS
132% of fundraising goal
MILES FOR MELANOMA
THECUREFOR ME LANOMA BEGINSWITH ME
$179,000 RAISED Over 1,000 participants
SAN FRANCISCO, CA l LOS ANGELES, CA l SAN DIEGO, CA DENVER, CO l ST. PAUL, MN l CHICAGO, IL l GAHANNA, OH PHILADELPHIA, PA l NEW YORK, NY l MORRISTOWN, NJ OCEAN CITY, NJ l BOSTON, MA l WASHINGTON, D.C. MEMPHIS, TN l ATLANTA, GA
$1.1 MILLION DOLLARS RAISED
WINGS OF HOPE FOR MELANOMA
DENVER April 26, 2017
SAN FRANCISCO June 7, 2017 CHICAGO September 27, 2017 NEW YORK October 11, 2017
2017 Courage Award recipients Kim Hunt, Paige Holt, Christopher Westdyk and Aaron Davis.
Gala attendees share how they will encourage melanoma awareness and prevention on the Wings of Hope pledge board.
A review of new treatments developed in recent years from research advances like those made possible by Wings of Hope gala supporters.
MRF’S INAUGURAL CORPORATE LEADERSHIP AWARD
Aaron Davis, Paige Holt, Kim Hunt & Christopher Westdyk
Ellen S. Marmur, MD, Dermatologic and Cosmetic Surgeon
HUMANITARIAN AWARD “There will be a day when there is no more skin cancer. But until then, let’s pour our support into the vital Melanoma Research Foundation to help continue research for better, faster, safer cures for melanoma.”
COURAGE AWARD “You, our friends, our family, our
medical professionals are our wings of hope. You are what we need to keep going.” — Aaron Davis
Richard Carvajal, MD, Director, Melanoma Service, Director, Experimental Therapeutics, Columbia University Medical Center
for their launch of the Long Live Skin Campaign
Amanda Carter, FNP, Oncology Nurse Practitioner, Columbia University Medical Center
CURE OM VISION OF HOPE AWARD “It’s the researchers, the clinicians, the patients and loved ones — this isa team. We have to work as a team and together we can beat this disease.”
COMPASSIONATE CARE AWARD “With shared humor and honesty, cancer can never overcome the human heart.”
View all 2017 MRF honorees at www.melanoma.org
INITIATED NEW WAYS DONORS CAN GIVE TO SUPPORT THE MRF’S MISSION
Donors can now...
Support the MRF with every purchase you make on
joins the MRF’s Shop for Good community.
MELANOMA RESEARCH FOUNDATION 1411 K Street, NW Suite 800 Washington, D.C. 20005 202.347.9675 or 800.673.1290Page 1 Page 2 Page 3 Page 4 Page 5 Page 6 Page 7 Page 8 Page 9 Page 10 Page 11 Page 12 Page 13 Page 14 Page 15 Page 16 Page 17 Page 18
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