PLATINUM2024

Multiple Myeloma Research Foundation, Inc.

Accelerating a cure for each and every myeloma patient

aka MMRF   |   Norwalk, CT   |  https://www.themmrf.org

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Mission

The Multiple Myeloma Research Foundation is the largest nonprofit in the world solely focused on accelerating a cure for each and every multiple myeloma patient. We drive the development and delivery of next-generation therapies, leverage data to identify optimal and more personalized treatment approaches, and empower patients and the broader community with information and resources to extend their lives. Central to our mission is our commitment to advancing health equity so that all myeloma patients can benefit from the scientific and clinical advances we pursue. Since our inception, the MMRF has committed over $600 million for research, opened nearly 100 clinical trials, and helped bring 15+ FDA-approved therapies to market, which have tripled the life expectancy of myeloma patients.

Ruling year info

1998

President & Chief Executive Officer

Mr. Michael Andreini

Main address

383 Main Avenue 5th Floor

Norwalk, CT 06851 USA

Show more contact info

EIN

06-1504413

NTEE code info

Cancer (G30)

Cancer Research (H30)

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 2022, 2021 and 2020.
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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Multiple myeloma is the second most common blood cancer. The Multiple Myeloma Research Foundation (MMRF) is the largest nonprofit in the world solely focused on accelerating a cure for each and every multiple myeloma patient.

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?

The Myeloma Investment Fund (MIF)

The MMRF's venture philanthropy subsidiary, the Myeloma Investment Fund (MIF), is the first and only mission driven venture philanthropy fund focused on myeloma. It identifies and invests in the most promising biotechnology companies with innovative clinical assets and technologies that could be transformative for myeloma patients.

The development of better and more personalized treatments for myeloma largely depends on biotechnology companies. Investments in these companies through the MIF provide the financial and strategic support to drive a stable, sustainable pipeline for the development of new therapies. The MIF also works closely with its portfolio companies to help them advance their myeloma programs and improve their probability of success.

Population(s) Served

The Multiple Myeloma Research Consortium (MMRC) is a network of leading myeloma treatment centers that conduct early-stage clinical trials to evaluate novel treatment strategies for patients. This collaborative research model has conducted close to 100 Phase I and Phase II clinical trials, enrolling over a thousand patients to date. The MMRC continues to successfully foster the development of novel therapies and champion rigorous research and clinical trials. Current MMRC clinical trials that have the potential to make significant contributions for myeloma treatment include: MyDRUG, a groundbreaking clinical trial program that is testing multiple new treatments for patients with high-risk multiple myeloma.

Population(s) Served
People with diseases and illnesses
Families

MyDRUG is a groundbreaking clinical trial program that is testing multiple new treatments for patients with high-risk multiple myeloma. It is evaluating treatments that are targeted against specific genomic alterations within the myeloma cells.

The scientific hypothesis for the MyDRUG clinical trial came out of our CoMMpass Study, which has generated the largest myeloma genomics database openly accessible to researchers across the globe.

Population(s) Served
People with diseases and illnesses
Families

The MMRF CoMMpass Study is a landmark longitudinal genomic-clinical study of more than 1,100 patients and was designed to provide researchers with as much information as possible about myeloma.

CoMMpass is one the largest myeloma datasets in the public domain. It focuses on mapping the genomic landscape of myeloma to understand patient subtypes, risk stratification, and identify new targets.

Population(s) Served
People with diseases and illnesses
Families

A person's immune system is a critical defense against the development of cancer. The immune system can detect and destroy abnormal cells, including cancer cells. As people age, the immune system weakens, which can lead to the development of cancer, including multiple myeloma.

To fully understand myeloma disease biology, we need deep knowledge of not only the genetics of myeloma, but also myeloma patient immunity. Specifically, we need to understand how a myeloma patient's immune system can change during the development of their disease and how it is affected by therapy.

To drive this understanding the MMRF is developing an immune-focused database (the MMRF Immune Atlas) describing the myeloma patient immune system from disease development, through diagnosis and their treatment journey.

This information, from hundreds of patients, will be combined with the existing genomic and clinical data from our CoMMpass Study to develop a more comprehensive picture of myeloma disease biology.

Population(s) Served
People with diseases and illnesses
Families

The MMRF CureCloud is one of the largest longitudinal data sets in multiple myeloma, with over 1,000 patients enrolled. The data from this study is being used in ongoing research and will be made available to researchers to help accelerate a cure for each and every myeloma patient.

Population(s) Served

All the data we generate through a variety of research programs including CoMMpass and CureCloud will ultimately be stored and shared with other researchers through the MMRFs Virtual Lab. We know that driving scientific advances for patients happens more quickly when we work togetherthats why weve invested in a data architecture, analytics, and sharing platform to enable better collaboration with our data in Virtual Lab.

Population(s) Served

The MMRF Scholars Program provides financial support for qualified Black and African American researchers and clinicians (MD and/or PhD or equivalent degree(s)) currently active, or interested in pursuing a career, in the field of myeloma.

The MMRF Myeloma Omics Initiative is a new Clinical Translational Research Program. Successful applicants will receive access to state-of-the-art -omics platforms and analytics resources to analyze bone marrow and peripheral blood samples from patients enrolled in high-value clinical studies in myeloma and precursor conditions.

The MMRF Research Fellow Award Program is an initiative supporting researchers at the post-doctorate, medical fellow or junior faculty levels working under the supervision or guidance of a research mentor in the myeloma field.

The Myeloma Accelerator Challenge Grants support multicenter translational research projects focused on patients with the highest unmet need for 3 years.

Population(s) Served

Navigating a new diagnosis and variety of treatment options can be complex. The MMRF Patient Navigation Center enables multiple myeloma patients and caregivers to connect with patient navigators for information and support. Patients can connect with a patient navigator via phone, email, or online web form.

Population(s) Served

There are times when patients have questions during their journey with myeloma that only another patient or caregiver can answer. The MMRF Myeloma Mentors program provides patients and caregivers the opportunity to connect with trained mentors. These mentors are fellow patients and caregivers who share personal insights to help inform, activate, empower, and support the multiple myeloma community.

Population(s) Served
People with diseases and illnesses
Families
People with diseases and illnesses
Families
People with diseases and illnesses
Families

Where we work

Accreditations

Hartford Business Journal: Healthcare Hero Award for Innovation 2021

Our results

SOURCE: Self-reported by organization

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

Number of people visiting our website for information about the Multiple Myeloma Research Foundation

This metric is no longer tracked.
Totals By Year
Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Donations raised through Fundraising Events

This metric is no longer tracked.
Totals By Year
Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Patients enrolled in Multiple Myeloma Research Consortium Trials

This metric is no longer tracked.
Totals By Year
Related Program

The Multiple Myeloma Research Consortium (MMRC)

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Research Expenditures

This metric is no longer tracked.
Totals By Year
Type of Metric

Input - describing resources we use

Direction of Success

Increasing

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 Multiple Myeloma Research Foundation (MMRF) is the largest nonprofit in the world solely focused on accelerating a cure for each and every multiple myeloma patient. We drive the development and delivery of next-generation therapies, leverage data to identify optimal and more personalized treatment approaches, and empower myeloma patients and the broader community with information and resources to extend their lives. Central to our mission is our commitment to advancing health equity so that all myeloma patients can benefit from the scientific and clinical advances we pursue. Since our inception, the MMRF has committed over $500 million for research, opened nearly 100 clinical trials, and helped bring 15+ FDA-approved therapies to market, which have tripled the life expectancy of myeloma patients.

Accelerate the Development of Novel Therapies
Its vital that we continue to drive the development of novel therapies, so that myeloma patients can benefit from the most important advances in cancer treatment. We do this by investing directly in early-stage biopharma companies with promising technologies and conducting clinical trials that evaluate novel treatment approaches.

Drive Optimal and More Personalized Treatment Approaches
Multiple myeloma is a heterogeneous disease, meaning it is defined by many subtypes and can look differently in each individual patient. Therefore, we need to better understand what treatments are best for each patient based on their individual characteristics.

The MMRF heavily invests in the generation and analysis of robust molecular and clinical data, as well as other translational research programs to ensure all patients can get the maximum benefit from the treatment options that are available to them today and in the future.

Empower Patients and the Community
Multiple myeloma can affect anyone, but not all patients receive a timely diagnosis or have equitable access to the latest standard of care, therapies, or clinical trial opportunities.

We provide high-quality education and support for myeloma patients and their families, as well as for their healthcare providers, to improve care and extend lives, with a focus on reaching historically underserved patient populations. Our programs and partnerships with the myeloma clinical and research community meet patients where they are to advance more equitable access to information and care to drive better outcomes for every patient.

The MMRF is focused on accelerating the development of novel therapies, driving optimal and more personalized treatment approaches, empowering patients in the myeloma community, and promoting diversity, equity, and inclusion (DEI) and health equity.

Through the Multiple Myeloma Research Consortium (MMRC), the MMRF brings together 23 leading cancer centers in North America to execute early-stage clinical trials. The MMRC sponsors a platform study called MyDRUG which evaluates targeted therapies against specific genomic alterations. The Myeloma Investment Fund (MIF), the MMRF's venture philanthropy subsidiary, identifies and invests in the most promising small, private companies with early-stage assets to accelerate development of novel and potentially transformative treatments for myeloma.

The MMRF has collected thousands of patient samples and made them available to researchers through the groundbreaking CoMMpass study the most comprehensive longitudinal genomic study ever conducted in myeloma and one of the largest genomic datasets of any cancer. The MMRF is now building on that legacy via the Immune Atlas program. Launched in 2020, the Immune Atlas is a research project that is complementing the genomic and clinical data in CoMMpass with immune profiling of the same patients, creating standards and generating robust immune data to further advance personalized medicine approaches.

In addition to driving proportional patient representation in research and clinical studies, the MMRF is ending disparities affecting patient outcomes and access to standard of care through awareness and education and building an organization and partner network that reflects the diverse community we serve.

The MMRF Patient Navigation Center enables multiple myeloma patients and caregivers to connect with patient navigators for guidance, information, and support. Patients can connect with a patient navigator via phone, email, or online web form. To provide resources for patients, the MMRF hosts on-demand information about multiple myeloma, treatment options, and clinical trials from experts and patients on its website. Programs include webinars, live and virtual patient summits, brochures, and CME-accredited programs for healthcare professionals.

The MMRF invests approximately $30-$40 million each year to support the advancement of its research portfolio and advance patient/donor education and awareness. Funding is supported primarily through the support of individual donors. In addition, the MMRF receives research funding through foundation grants, government grants, and pharmaceutical grants.

The MMRF is governed by a strong Board of Directors and led by an Executive Committee that provides strategic oversight and operational management. With a breadth of experience spanning pharmaceutical companies, contract research organizations, marketing and communications firms and academia, our leadership has expertise in all aspects of drug discovery and drug development.

Partnerships with external organizations have also proven critical to the Foundation's success to date and ongoing and future research initiatives. Our partners include academic institutes, community cancer centers, pharmaceutical and biotech companies, other non-profit organizations, and government entities.

Since its inception, the MMRF has collected thousands of samples and tissues, opened nearly 100 trials, helped bring 15+ FDA-approved therapies to market, and built CoMMpass, one of the largest genomic datasets for any cancer. Today, the MMRF is building on its legacy in genomics and is expanding into immunotherapy, as the combination of these two fields will be critical to making precision medicine possible for all patients. The MMRF has raised over $600 million and directs nearly 90% of the total funds to research and related programs.

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 demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, 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 identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

  • 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 engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback

Financials

Multiple Myeloma Research Foundation, Inc.
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Operations

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

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
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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.

Multiple Myeloma Research Foundation, Inc.

Board of directors
as of 03/06/2024
SOURCE: Self-reported by organization
Board chair

Mr. Thomas Conheeney

William McKiernan

WSM Capital, LLC

Kenneth Anderson, MD

Jerome Lipper Multiple Myeloma Center, Dana-Farber Cancer Institute

Karen Andrews

Cadence13

Kathy Giusti

Lori Tauber Marcus

Courtyard Connections

Gerald McDougall

Mike Mortimer

GHO Capital Partners LLP

David Parkinson, MD

ESSA Pharma Inc.

Marie Pinizzotto, MD

Carol A. Ammon Foundation

David Lucchino

Frequency Therapeutics, Inc.

Steve Shak, MD

Genomic Health

Thomas Conheeney

Rodney Gilmore

Doty Barlow Britt & Thieman LLP

Susan Marvin

The Marvin Companies

Hugh Martin

Verizon

Adrian Rosenkranz

Tableau Americas

Kimberly A. White

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
  • 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

Organizational demographics

SOURCE: Self-reported; last updated 2/23/2024

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male
Sexual orientation
Decline to state
Disability status
Decline to state

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 12/08/2021

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 review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.