MELANOMA RESEARCH FOUNDATION

aka MRF   |   Washington, DC   |  http://www.melanoma.org

Mission

To support medical RESEARCH for finding effective treatments and eventually a cure for melanoma. To EDUCATE patients and physicians about the prevention, diagnosis and treatment of melanoma. To act as an ADVOCATE for the melanoma community to raise the awareness of this disease and the need for a cure.

Ruling year info

1996

Chief Executive Officer

Kyleigh LiPira

Main address

1420 K Street NW 7th Floor

Washington, DC 20005 USA

Show more contact info

EIN

76-0514428

NTEE code info

Cancer (G30)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

Sign in or create an account to view Form(s) 990 for 2020, 2019 and 2018.
Register now

Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Skin cancer is the most common form of cancer in the United States, and melanoma is the deadliest type. Additionally, rare and aggressive subtypes of melanoma occur in other areas like the eye and mucosal surfaces of the body. Approximately 1.3 million Americans live with melanoma currently, and an estimated 207,000 more will be diagnosed this year. More than 7,100 will die from the disease. Despite these numbers, nearly 90% of melanoma diagnoses are considered to be preventable. The Melanoma Research Foundation (MRF) encourages melanoma awareness and education to promote prevention and early detection, while offering comprehensive patient and caregiver support resources and providing millions of dollars in research funding for better treatments and, one day, a cure for melanoma.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

MRF Programs Description

Supports medical
research in finding effective treatments and eventually a cure for melanoma
through fundraising events such as Miles for Melanoma, educates patients and
physicians about prevention, diagnosis and the treatment of melanoma through
programs such as the MRF’s educational symposia, raises awareness of this
disease and the need for a cure through advocacy and media outreach.

Population(s) Served
People with diseases and illnesses

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Total number of grants awarded

This metric is no longer tracked.
Totals By Year
Population(s) Served

Chronically ill people, Terminally ill people, Researchers, Students, Teachers

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Total dollar amount of grants awarded

This metric is no longer tracked.
Totals By Year
Population(s) Served

Chronically ill people, Students, Teachers, Researchers

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of individuals attending community events or trainings

This metric is no longer tracked.
Totals By Year
Population(s) Served

Chronically ill people, Caregivers, Activists

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context Notes

This metric notes registered attendees at MRF Advocacy Days (formerly Advocacy Summit & Hill Day), bringing melanoma advocates to Washington, DC to meet their lawmakers and advocate for the community.

Number of participants attending course/session/workshop

This metric is no longer tracked.
Totals By Year
Population(s) Served

Chronically ill people, Academics, People with vision impairments, Caregivers, Parents

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Total attendees at 2020 CURE OM Patient & Caregiver Global Symposium, Pediatric Melanoma Summit and CURE OM Science Meeting. Additional event attendees reported in separate metric.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

The MRF supports medical research for finding effective treatments and eventually a cure for melanoma. It educates patients and physicians about the prevention, diagnosis and treatment of melanoma and advocates for the melanoma community to raise awareness of this disease and the need for a cure. Creating better outcomes for people impacted by melanoma has been, and will continue to be, at the core of our mission.

The Melanoma Research Foundation (MRF) is committed to advancing a broad scientific agenda across the disciplines of prevention, diagnosis and treatment. It is proud to collaborate with research institutions, investigators, government entities and various leading melanoma organizations. These critical partnerships aim to improve the quality and length of life for melanoma patients.

The MRF's education department offers, free of charge, a broad variety of resources including a growing library of print materials, an online webinar series, a Certified Melanoma Educator program, in-person patient & caregiver symposia hosted throughout the country, and other outlets to expand melanoma education and awareness.

The MRF is a dedicated advocate for the melanoma community and empowers a nationwide network of volunteers to make their voices heard. In addition to an annual Advocacy Summit in Washington, DC, the MRF coordinates year-round advocacy initiatives at the local, state & federal levels.

The MRF prides itself on having a dedicated staff, a committed Board of Directors (the majority of whom are melanoma survivors), advisory boards and partnerships with renowned researchers and institutions and an incredibly dedicated community of supporters who make our work possible. With a strong commitment to responsible stewardship, transparency and leadership in the field, the MRF will continue to advance the pace of melanoma research, education and advocacy. The MRF is also proud to partner with organizations like the National Council of Skin Cancer Prevention (NCSCP) and the Global Coalition for Melanoma Patient Advocacy. These partnerships advance our shared agendas and broaden the reach of research, treatments and potentially life-saving prevention and early detection messaging.

The melanoma research landscape has seen tremendous progress in the last decade. Where treatment options were once highly limited, there are now over a dozen FDA-approved treatments, with even more currently in development. This research progress has been supported by over $20 million in funding from the MRF since our founding. Advocacy efforts have led to legislation that protects children and teens from the dangers of tanning, removes restrictions on sunscreen use in schools and has significantly increased federal funding for melanoma research. The MRF was instrumental in the creation of the Department of Defense Peer Reviewed Cancer Research Program, which has contributed over $50 million in government funding to melanoma research in the past decade. MRF education and awareness programs continue to promote the importance of early detection - when melanoma is highly treatable - and shift the public perception and dangerous message that skin must be tanned to be beautiful.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    The Melanoma Research Foundation (MRF) serves patients, caregivers, supporters and loved ones in the melanoma community, as well as the researchers, physicians and scientists working to develop new, more effective treatments for melanoma. Additionally, the MRF seeks to increase education and awareness of melanoma and its prevention among the general public, so that fewer individuals and families will have to face this disease.

  • How is your organization collecting feedback from the people you serve?

    SMS text surveys, Electronic surveys (by email, tablet, etc.), Paper surveys, Focus groups or interviews (by phone or in person), Community meetings/Town halls, Constituent (client or resident, etc.) advisory committees,

  • How is your organization using feedback from the people you serve?

    To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    In response to the COVID-19 pandemic, MRF programs, events and patient services have transitioned to almost entirely virtual. Through the collection of surveys, targeted outreach and the consultation of steering committees consisting of constituents in our community, the MRF adapted these offerings to virtual programs, webinars and online fundraising events. Additionally, a new series of pre-recorded webinars and live "Ask the Expert" broadcasts were developed around a wide variety of topics in response to the stated needs and interests of our community members.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners,

  • How has asking for feedback from the people you serve changed your relationship?

    The MRF was founded by a melanoma patient, and since that day the patient perspective has been at the core of every aspect of our work. A patient-centric approach to melanoma research, education and advocacy ensures that our resources are devoted to the most pressing needs of our community. As an example, the MRF now incorporates a patient review panel as part of our grant review process, so that those directly affected by new treatment developments have a voice in determining which areas of research receive funding, alongside a traditional scientific advisory committee.

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback,

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback,

Financials

MELANOMA RESEARCH FOUNDATION
lock

Unlock financial insights by subscribing to our monthly plan.

Subscribe

Unlock nonprofit financial insights that will help you make more informed decisions. Try our monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights?
Learn more about GuideStar Pro.

Operations

The people, governance practices, and partners that make the organization tick.

lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

MELANOMA RESEARCH FOUNDATION

Board of directors
as of 4/21/2021
SOURCE: Self-reported by organization
Board co-chair

Douglas Brodman


Board co-chair

Steven Silverstein

Mike Atkins

Steve Silverstein

Alison Martin

Bill Reilly

Cheryl Stratos

Mark Weinzerl

Stan Adler

Tony Hendrickson

Doug Brodman

Glenn Merlino

Jill Wrobel

Tom Westdyk

Elise Barish

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No

Organizational demographics

SOURCE: Self-reported; last updated 03/19/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
Decline to state
Gender identity
Female
Sexual orientation
Decline to state
Disability status
Decline to state

Race & ethnicity

No data

Gender identity

 

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 03/19/2021

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.