Mission: Founded in 1998, The Multiple Myeloma Research Foundation (MMRF) relentlessly pursues innovative means that accelerate the development of next-generation multiple my ... (More)

The Multiple Myeloma Research Foundation is a 501(c)(3) organization, with an IRS ruling year of 1998, and donations are tax-deductible.

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Contact Information

  http://www.multiplemyeloma.org/

 383 Main Avenue
5th Floor
Norwalk CT 06851 

  203-229-0464


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Star Rating System by Charity Navigator


Charity Navigator evaluates a nonprofit organization’s financial health including measures of stability, efficiency and sustainability. We also track accountability and transparency policies to ensure the good governance and integrity of the organization.




Exceptional

This charity's score is 94.97, earning it a 4-Star rating. Donors can "Give with Confidence" to this charity. 

This score is calculated from two sub-scores:

This score represents Form 990 data from 2019, the latest year published by the IRS.

View this organization’s historical ratings.


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Star Rated Report

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Program Expense

Program Expense Ratio

87.6%


The Program Expense Ratio is determined by Program Expenses divided by Total Expense (average of most recent three 990s).


This measure reflects the percent of its total expenses a charity spends on the programs and services it exists to deliver. Dividing a charity's average program expenses by its average total functional expenses yields this percentage. We calculate the charity's average expenses over its three most recent fiscal years.


Source: IRS Form 990

Administrative Expenses

1.9%


As reported by charities on their IRS Form 990, this measure reflects what percent of its total budget a charity spends on overhead, administrative staff and associated costs, and organizational meetings. Dividing a charity's average administrative expenses by its average total functional expenses yields this percentage. We calculate the charity's average expenses over its three most recent fiscal years.


Source: IRS Form 990

Fundraising Expenses

10.4%


This measure reflects what a charity spends to raise money. Fundraising expenses can include campaign printing, publicity, mailing, and staffing and costs incurred in soliciting donations, memberships, and grants. Dividing a charity's average fundraising expenses by its average total functional expenses yields this percentage. We calculate the charity's average expenses over its three most recent fiscal years.


Source: IRS Form 990

Liabilities to Assets Ratio

29.5%


The Liabilities to Assets Ratio is determined by Total Liabilities divided by Total Assets (most recent 990).


Part of our goal in rating the financial performance of charities is to help donors assess the financial capacity and sustainability of a charity. As do organizations in other sectors, charities must be mindful of their management of total liabilites in relation to their total assets. This ratio is an indicator of an organization’s solvency and or long term sustainability. Dividing a charity's total liabilities by its total assets yields this percentage.


Source: IRS Form 990

Fundraising Efficiency

$0.08


The amount spent to raise $1 in charitable contributions. To calculate a charity's fundraising efficiency, we divide its average fundraising expenses by the average total contributions it receives. We calculate the charity's average expenses and average contributions over its three most recent fiscal years.


Source: IRS Form 990

Working Capital Ratio

1.66 years


Determines how long a charity could sustain its level of spending using its net available assets, or working capital, as reported on its most recently filed Form 990. We include in a charity's working capital unrestricted and temporarily restricted net assets, and exclude permanently restricted net assets. Dividing these net available assets in the most recent year by a charity's average total expenses, yields the working capital ratio. We calculate the charity's average total expenses over its three most recent fiscal years.


Source: IRS Form 990

Program Expense Growth

5.89%


We compute the average annual growth of program expenses using the following formula: [(Yn/Y0)(1/n)]-1, where Y0 is a charity's program expenses in the first year of the interval analyzed, Yn is the charity's program expenses in the most recent year, and n is the interval of years passed between Y0 and Yn.


Source: IRS Form 990

Governance


Charity Navigator looks to confirm on the Form 990 that the organization has these governance practices in place.


Sources Include: IRS Form 990

Governance:
Independent Voting Board Members  ... (More)
No Material Diversion of Assets ... (More)

A diversion of assets – any unauthorized conversion or use of the organization's assets other than for the organization's authorized purposes, including but not limited to embezzlement or theft – can seriously call into question a charity's financial integrity. We check the charity's last two Forms 990 to see if the charity has reported any diversion of assets. If the charity does report a diversion, then we check to see if it complied with the Form 990 instructions by describing what happened and its corrective action. This metric will be assigned to one of the following categories:

  • Full Credit: There has been no diversion of assets within the last two years.

  • Partial Credit: There has been a diversion of assets within the last two years and the charity has used Schedule O on the Form 990 to explain: the nature of the diversion, the amount of money or property involved and the corrective action taken to address the matter. In this situation, we deduct 7 points from the charity's Accountability and Transparency score.
  • No Credit: There has been a diversion of assets within the last two years and the charity's explanation on Schedule O is either non-existent or not sufficient. In this case, we deduct 15 points from the charity's Accountability and Transparency score.
(Less)
Audited Financials Prepared by Independent Accountant ... (More)

Audited financial statements provide important information about financial accountability and accuracy. They should be prepared by an independent accountant with oversight from an audit committee. (It is not necessary that the audit committee be a separate committee. Often at smaller charities, it falls within the responsibilities of the finance committee or the executive committee.) The committee provides an important oversight layer between the management of the organization, which is responsible for the financial information reported, and the independent accountant, who reviews the financials and issues an opinion based on its findings. We check the charity's Form 990 reporting to see if it meets this criteria.

  • Full Credit: The charity's audited financials were prepared by an independent accountant with an audit oversight committee.

  • Partial Credit: The charity's audited financials were prepared by an independent accountant, but it did not have an audit oversight committee. In this case, we deduct 7 points from the charity's Accountability and Transparency score.
  • No Credit: The charity did not have its audited financials prepared by an independent accountant. In this case, we deduct 15 points from the charity's Accountability and Transparency score.
(Less)
Does Not Provide Loan(s) to or Receive Loan(s) From Related Parties ... (More)
Documents Board Meeting Minutes ... (More)
Distributes 990 to Board Before Filing ... (More)
Compensates Board ... (More)

Policies


Charity Navigator looks to confirm on the Form 990, or for some metrics on the charity's website, that the organization has these policies in place.


Sources Include: IRS Form 990 and organization's website

Policies:
Conflict of Interest  ... (More)
Whistleblower ... (More)
Records Retention and Destruction ... (More)
CEO Compensation Process ... (More)
Donor Privacy ... (More)

Donors have expressed extreme concern about the use of their personal information by charities and the desire to have this information kept confidential. The exchanging and sale of lists for telemarketing and the mass distribution of "junk mail," among other things, can be minimized if the charity assures the privacy of its donors. Privacy policies are assigned to one of the following categories:

  • Yes: This charity has a written donor privacy policy published on its website, which states unambiguously that (1) it will not share or sell a donor's personal information with anyone else, nor send donor mailings on behalf of other organizations or (2) it will only share or sell personal information once the donor has given the charity specific permission to do so.

  • Opt-out: The charity has a written privacy policy published on its website which enables donors to tell the charity to remove their names and contact information from lists the charity shares or sells. How a donor can have themselves removed from a list differs from one charity to the next, but any and all opt-out policies require donors to take specific action to protect their privacy.
  • No: This charity either does not have a written donor privacy policy in place to protect their contributors' personal information, or the existing policy does not meet our criteria.

The privacy policy must be specific to donor information. A general website policy which references "visitor" or "user" personal information will not suffice. A policy that refers to donor information collected on the website is also not sufficient as the policy must be comprehensive and applicable to both online and offline donors. The existence of a privacy policy of any type does not prohibit the charity itself from contacting the donor for informational, educational, or solicitation purposes.

(Less)

Transparency


Charity Navigator looks to confirm on the Form 990, or for some metrics on the charity's website, that the organization makes this information easily accessible.


Sources Include: IRS Form 990 and organization's website

Transparency:
CEO Salary Listed on 990 ... (More)
Board of Directors Listed on Website ... (More)
Key Staff Listed on Website ... (More)
Audited Financial Statements on Website ... (More)
Form 990 Available on Website ... (More)

Additional Information

Unscored

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Total Revenue and Expenses

Total Revenue and Expenses

This chart displays the trend of revenue and expenses over the past several years for this organization, as reported on their IRS Form 990.

Salary of Key Persons

Presented here are this organizations key compensated staff members as identified by our analysts. This compensation data includes salary, cash bonuses and expense accounts and is displayed exactly how it is reported to the IRS. The amounts do not include nontaxable benefits, deferred compensation, or other amounts not reported on Form W-2. In some cases, these amounts may include compensation from related organizations. Read the IRS policies for compensation reporting



Paul Giusti, President & CEO

$543,455 (1.62% of Total Expenses)


Current CEO and Board Chair can be found in the Leadership & Adaptability report below.

Source: IRS Form 990 (page 7), filing year 2019

Business Master File Data

Below are some key data points from the Exempt Organization IRS Business Master File (BMF) for this organization. Learn more about the BMF on the IRS website


Activities:

Described in section 170(b)1)(a)(vi) of the Code (BMF activity code: 994)

Gifts, grants, or loans to other organizations (BMF activity code: 602)


Foundation Status:

Organization which receives a substantial part of its support from a governmental unit or the general public   170(b)(1)(A)(vi) (BMF foundation code: 15)


Affiliation:

Independent - the organization is an independent organization or an independent auxiliary (i.e., not affiliated with a National, Regional, or Geographic grouping of organizations). (BMF affiliation code: 3)

Data Sources: IRS Forms 990

The Form 990 is a document that nonprofit organizations file with the IRS annually. We leverage finance and accountability data from it to form Encompass ratings. Click here to view this organization's Forms 990 on the IRS website (if any are available).

Pandemic Response

Due to the unprecedented nature of the pandemic, we give charities such as this one the opportunity to share the story of COVID's impact on them. Charities may submit their own pandemic responses through their nonprofit portal.


The Multiple Myeloma Research Foundation reported being impacted by COVID-19 in the following ways:
  • Program Delivery

  • Fundraising Capacity

  • Revenue

  • Staffing

  • Administrative Capacity

  • Balance Sheet


How COVID-19 impacted the organization's operations financially:

Despite the many challenges presented in 2020, the MMRF remained steadfast in its mission to accelerate a cure for each and every multiple myeloma patient. And while we continued to utilize all active revenue streams, due to the negative impacts of Covid-19 on virtually all nonprofits and disease-focused organizations, the MMRF experienced a revenue shortfall of over $20 million (42%) compared to our 2019 results. With that said, we forged ahead and continued our innovative work on behalf of patients and donors, providing virtual patient education seminars and fundraising opportunities, and launching the MMRF CureCloud®.


How COVID-19 impacted the organization's delivery of programs:

A key component of our research programs has been our ability to partner with our network of leading academic myeloma centers through the MMRC (Multiple Myeloma Research Consortium). Throughout Covid-19, these medical centers were required to reallocate their clinical staff to support Covid response efforts. The FDA recommended a three month hold on new enrollments to clinical trials – and this resulted in a 40% decrease in clinical enrollment across our 15 existing clinical trials. The MMRC was delayed in completing the activation of the MyDRUG platform trial, and the startup of its new immune platform trial, MyCheckpoint. Our clinical operations team still worked diligently and proactively with sites to identify and enroll 116 patients on the 12 active clinical studies in the Multiple Myeloma Research Consortium (MMRC) in 2020. We were launched the MMRF CureCloud in July of 2020 to patients with active myeloma, with an expanded launch to smoldering patients in December of 2020.


How this organization adapted to changing conditions caused by COVID-19:

The MMRF invested in its technology infrastructure which allowed the organization to adapt quickly to the Covid-19 environment, and launch programs, patient education and events in the virtual space. In July, 2020 we launched the MMRF CureCloud, a $40+ million longitudinal patient study and the most innovative & ambitious data generation initiative in MMRF history. This direct-to-patient research study offers patients the first at-home genomic testing program and the return of a clinical-grade report that can be used to identify treatments and trials that may be right for their care. CureCloud is designed to democratize access to data so patients and clinicians can make better, more informed decisions on precision medicine treatments for patients. Additionally, the MMRF transitioned its live events to virtual platforms to communicate the latest advances in the disease to our patients. From virtual 5K races to digital donor events like town halls, our programming took new forms.


Innovations the organization intends to continue permanently after the pandemic:

The MMRF plans to continue utilizing virtual events and donor check-ins (town halls, donor cultivation events) and will offer a hybrid approach to certain fundraising events as well. We’ll also continue to participate in conferences, interviews and roundtables virtually, as appropriate, from our new in-office virtual film studio. And to the extent that we can use the space for podcasts and various content series, it simply proves that going virtual has opened the door to additional content opportunities for our marketing and communications efforts. We will also continue to advance the CureCloud program with new patient visualizations and tools.


Historical Ratings

Date PublishedForm 990 FYEOverall ScoreOverall Rating
Rating Version: 2.1
7/1/20212019 94.97
3/1/20202018 96.25
5/1/20192017 98.23
6/1/20182016 91.64
7/1/20172015 92.61
6/1/20162014 92.60
Rating Version: 2.0
12/22/20152014 92.57
3/1/20152013 82.90
12/1/20132012 97.50
12/20/20122011 97.48
12/23/20112010 91.79
9/20/20112009 95.23
Rating Version: 1.0
12/1/20102009 93.58
2/1/20102008 93.79
12/17/20082007 91.79
12/1/20072006 94.33
12/15/20062005 96.82
1/1/20062004 96.89
1/5/20052003 96.88
1/1/20042002 94.37

...   Impact & Results


This score estimates the actual impact a nonprofit has on the lives of those it serves, and determines whether it is making good use of donor resources to achieve that impact.


Impact & Results Score

Not Currently Scored

The Multiple Myeloma Research Foundation cannot currently be evaluated by our Encompass Rating Impact & Results methodology because either (A) it is eligible, but we have not yet received data; (B) we have not yet developed an algorithm to estimate its programmatic impact; (C) its programs are not direct services; or (D) it is not heavily reliant on contributions from individual donors.

Note: The absence of a score does not indicate a positive or negative assessment, it only indicates that we have not yet evaluated the organization.

Learn more about Impact & Results.

Do you work at The Multiple Myeloma Research Foundation? Join the waitlist for an updated Impact & Results score.


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Additional Information

Unscored

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Largest Programs

Largest Programs



The Multiple Myeloma Research Foundation reported its three largest programs on its FY 2019 Form 990 as:


$6,059,428

Spent in most recent FY

21%

Percent of program expenses


THE MULTIPLE MYELOMA RESEARCH FOUNDATION (MMRF) SUPPORTS INVESTIGATORS AND SCIENTIFIC PROJECTS THROUGH A NUMBER OF RESEARCH GRANTS. THE GOAL OF THIS INITIATIVE IS TO ACCELERATE THE DEVELOPMENT OF THER ... (More)


$5,664,303

Spent in most recent FY

19%

Percent of program expenses


THE MULTIPLE MYELOMA RESEARCH CONSORTIUM, LLC. (MMRC) IS A SUBSIDIARY OF THE MULTIPLE MYELOMA RESEARCH FOUNDATION. THE MMRC IS THE FIRST RESEARCH MODEL THAT BRINGS TOGETHER 25 LEADING ACADEMIC CENTERS ... (More)


$3,998,441

Spent in most recent FY

13%

Percent of program expenses


THE MMRF LONGITUDINAL STUDY (COMMPASS) COMMENCED IN 2011 AND HAS BEEN EXTENDED THROUGH 2023. MMRF IS THE SPONSOR OF A PERSONALIZED MEDICINE INITIATIVE IN WHICH 1,153 NEWLY DIAGNOSED PATIENTS HAVE BEEN ... (More)


...   Leadership & Adaptability


This score provides an assessment of the organization's leadership capacity, strategic thinking and planning, and ability to innovate or respond to changes in constituent demand/need or other relevant social and economic conditions to achieve the organization's mission.


Leadership & Adaptability Score

100

out of 100

The score earned by The Multiple Myeloma Research Foundation is a passing score. This score has no effect on the organization's Star Rating.

Encompass Rating V4 provides an evaluation of the organization's Leadership & Adaptability through the nonprofit organization submitting a survey response directly to Charity Navigator.


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Leadership & Adaptability Report

100

of 100 points

Mission

The nonprofit organization presents evidence of strategic thinking through articulating the organization’s mission


The MMRF’s mission is to accelerate a cure for each and every multiple myeloma patient. Founded in 1998 by Kathy Giusti, a myeloma patient, and her sister Karen Andrews, the MMRF works tirelessly to bring new treatments to patients faster, and to build models that acquire new data critical to pursuing a cure for the disease. By working closely with researchers, clinicians and our partners in the biotech and pharmaceutical industries, we are working to improve and extend the lives of all myeloma patients. And our promise to patients is that we will continue to blaze new trails, acting with urgency to ensure every patient has better answers, more precise treatments, and the best possible outcomes.


Source: Nonprofit submitted responses

Vision

The nonprofit organization presents evidence of strategic thinking through articulating the organization’s vision.


The MMRF is a catalyst to the acceleration of a cure being discovered for multiple myeloma. And with myeloma affecting such a diverse group of individuals (e.g. 20% of all myeloma patients are black), providing access clinical trials, new drugs and data are critical to ensuring all myeloma patients receive the same opportunities. With myeloma being rare, complex and heterogenous, the MMRF aspires to cure your myeloma – that is, the specific type of disease that each individual patient possesses.


Source: Nonprofit submitted responses

Strategic Goals

The nonprofit organization presents evidence of strategic thinking and goal setting through sharing their most important strategic goals.


Goal One: 1. Expand research in the area of Immuno-Oncology—the next frontier in cancer research and precision treatment.

Goal Type: New program(s) based on observed changes in needs among our constituencies/communities served.


Goal Two: 2. Continue to invest in transformational therapies through the Myeloma Investment Fund-uncovering and advancing new therapies for myeloma patients.

Goal Type: Grow, expand, scale or increase access to the existing programs and services.


Goal Three: 3. Continue building/leveraging new business models, democratizing access to data to facilitate smarter, faster treatment options for all myeloma patients.

Goal Type: New program(s) based on observed changes in needs among our constituencies/communities served.


Source: Nonprofit submitted responses

Leadership Development

The nonprofit provides evidence of investment in leadership development


Describe an investment in leadership

We have engaged a firm to conduct leadership training to further assist us in developing our senior management team with the intent to role out similar training in the future to the remainder of our staff.

Source: Nonprofit submitted responses

Mobilizing for Mission

The nonprofit provides evidence of leadership through focusing externally and mobilizing resources for the mission.


This organization mobilizes for mission in the following ways:
  • Strategic Partnerships

  • Networks of Collective Impact Efforts

  • Thought Leadership

  • Raising Awareness

  • Community Building

What are this organization’s external mobilizaton efforts?

Through strategic partnerships, MMRF leadership and staff catalyze our mission to accelerate a cure for each and every myeloma patient. We do this through data sharing to drive breakthroughs, research collaborations, and patient engagement initiatives that are leading to new discoveries and better outcomes for the myeloma community. The MMRF identifies and works with the best partners across the disease research landscape in pursuit of our mission. The MMRF leadership team helps cultivate and supports these efforts, playing an active role in building partnerships with a diverse group of industry stakeholders. The MMRF leadership also engages in donor stewardship and thought leadership activities to advance the organization’s mission and bring much needed attention and resources to myeloma research. As a patient led organization, the MMRF emphasizes the importance of community building, training, and organizing to make the greatest impact on behalf of the community we serve.

Source: Nonprofit submitted responses

Story of Adaptability

The nonprofit has an opportunity to tell the story of how the organization adapted to tremendous external changes in the last year.


We have set several priorities for our organization that have enabled us to adapt the challenges of the last year. These include diversifying and sustain revenue streams, driving new treatments to the clinic and answers to our patients’ questions, and enhancing our brand identity and value story for the myeloma community. To sustain revenue, we have implemented a proactive, personalized, and ‘high-touch’ engagement and communications model to support major donor, planned giving, and general donations. Our events have been repurposed to support a hybrid virtual/in-person model, and we are exploring new opportunities in virtual fundraising and the corporate philanthropy space. In keeping with our highest level mission to accelerate a cure for each and every myeloma patient, we have sharped our focus on driving new, innovative treatments and rational combinations to patients in the clinic, while delivering answers to priority questions from patients through a proactive and iterative analytical framework and strategy. We have also implemented a refreshed brand story and communications plan to support donor and patient outreach and deliver immediate value to the myeloma community. These efforts include leveraging the breadth of MMRF resources for patients to better guide them on their treatment journey, and proactively inform our community of the latest research breakthroughs and educational information to keep them engaged during an unprecedented time.

Source: Nonprofit submitted responses

Additional Information

Unscored

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Organization Leadership

Organization Leadership


Michael Andreini

President and CEO

Mike Mortimer

Chairman

...   Culture & Community


This score provides an assessment of the organization's engagement with the constituents it serves, a practice we term Constituent Feedback. When organizations listen to constituents, they are able to better deliver on programs and meet the needs of stakeholders. A future version of this Beacon will also assess an organization's people operations and its Diversity, Equity and Inclusion (DEI) metrics.


Culture & Community Score

Not Currently Scored

The Multiple Myeloma Research Foundation is currently not eligible for a Culture & Community score because we have not received its Constituent Feedback data. Nonprofit organizations are encouraged to fill out the How We Listen section of their Candid profile. This data will provide the basis for the initial evaluation of Culture & Community.

Note: The absence of a score does not indicate a positive or negative assessment, it only indicates that we have not yet evaluated the organization.


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Culture & Community Report

Unscored

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Constituent Feedback

Constituent Feedback


Constituent Feedback and Listening Practice data are not available for this organization. Nonprofit organizations are encouraged to fill out the How We Listen section of their Candid profile. This data will provide the basis for the initial evaluation of Culture & Community.


Charity Navigator believes nonprofit organizations that engage in inclusive practices, such as collecting feedback from the people and communities they serve, may be more effective. We award every nonprofit that completes the Candid survey full credit for this Beacon, in recognition of their willingness to publicly share this information with the nonprofit and philanthropic communities. Although the data is not evaluated for quality at this time, future iterations of this Beacon will include third party or other data that will serve to validate the information provided by the nonprofit.

Analysis and Research


Like the overall Encompass Rating System, the Culture & Community Beacon is designed to evolve as metrics are developed and ready for integration. Our partnership with Feedback Labs and Guidestar by Candid, and other partners including Fund for Shared Insight, GlobalGiving, and Keystone Accountability, enables us to launch the first version of this beacon with Constituent Feedback information collected on Candid's site.


Feedback practices have been shown to support better Diversity, Equity, and Inclusion outcomes, an essential area of assessment that we intend to further expand and develop in the future. Feedback Labs has documented several studies which indicate that beyond achieving organizational goals, nonprofits that are attentive and responsive to concerns and ideas raised by beneficiaries establish stronger relationships with the people they serve, promote greater equity, and empower constituents in ways that can help to ensure better long-term outcomes. You can find resources to help nonprofits improve their feedback practices here.

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