METAVIVOR RESEARCH AND SUPPORT INC

Metastatic Breast Cancer Awareness, Research and Support

Annapolis, MD   |  www.metavivor.org

Mission

METAvivor is dedicated to the specific fight of women and men living with stage 4 metastatic breast cancer. At the time of METAvivor’s founding, no organization was dedicated to funding research for the disease and no patient groups were speaking out about the dearth of stage 4 cancer research. While more and more people have taken up the cry for more stage 4 research, METAvivor remains the sole US organization dedicated to awarding annual stage 4 breast cancer research.

Notes from the nonprofit

Metavivor Research and Support, Inc is the only US non-profit that funds stage IV metastatic breast cancer through a peer-reviewed process. It is simply the priority to end death from this terminal disease. Each year, Metavivor selects research proposals from an RFP process and funds as many proposals as possible with the donations received during that year. 100% of every donation goes to funds stage IV metastatic breast cancer research.

Ruling year info

2009

Executive Director

Sonya Negley

Main address

1783 Forest Drive, #184

Annapolis, MD 21401 USA

Show more contact info

EIN

37-1578088

NTEE code info

Cancer (G30)

Alliance/Advocacy Organizations (Y01)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Metavivor Research and Support works to fund metastatic breast cancer research that will one day, end death from the disease and transition the disease from terminal to chronic with a good quality of life. Metavivor also works to ensure patients have good local peer support, works to advocate for increased research and protect patient rights in health care and educate patients about the disease and latest research.

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?

Research grant funding

We fund research for metastatic breast cancer

Population(s) Served
Adults

Peer to Peer Support Groups are a wonderful way to meet with other MBC patients to share advice, encouragement and challenges, compare treatment facilitates, learn about local resources and simply enjoy the company of others who are on the same journey.

Population(s) Served
People with diseases and illnesses

Where we work

Awards

Fire Soul Award: "The one to take a spark of energy and with determination turn that vision into reality." 2010

Anne Arundel Medical Center, Annapolis MD

First Place - Patient Advocate Category for Research Study on Metastatic Breast Cancer Patient Lifestyle and Support Needs 2011

European School of Oncology: Advanced Breast Cancer First Consensus Conference, Lisbon Portugal

Videos

Our results

SOURCE: Self-reported by organization

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

Total dollar amount of grants awarded

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

People with diseases and illnesses

Related Program

Research grant funding

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

All research grants are peer reviewed and patient reviewed. Research grants are specifically for metastatic breast cancer research even in years where there may be special research projects.

Total number of grants awarded

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

People with diseases and illnesses

Related Program

Research grant funding

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

2019 was METAvivor's 10 year anniversary. METAvivor held a special grant program for career metastasis researchers called the Founder's Award that encouraged clinical research for MBC.

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.

METAvivor is an all-volunteer, non-profit organization that funds research, raises awareness, advocates for and provides support to people with Stage IV metastatic breast cancer.

Our goals are to:
1. Fund an increasing amount of metastatic breast cancer research every year.
2. Fund innovative research that move us forward toward finding better solutions for metastatic breast cancer patients.
3. Increase the amount of MBC awareness every year.
4. Offer patients and interested parties the opportunity to make a difference for those with metastatic breast cancer.

1. Raise an increasing amount of funds every year by increasing awareness of our cause . By putting 100% of donations and 100% of fundraiser proceeds into our metastatic breast cancer research grants, we make every penny of your donation count.
2. Work closely with the Metastasis Research Society to identify the most promising, out-of-the-box research proposals for funding.
3. Make our work known through social media and advocacy campaigns.

1. We have successful kept expenses low to maximize the funds available for research.
2. We have a very strong relationship with the Metastasis Research Society and have close working relationships with some of the world's leading career metastasis researchers.
3. We have a strong and growing social media presence, and are frequently asked to be guest speakers at events worldwide.
4. We have worldwide interest in our organization and have begun a formal program to incorporate these individuals into our operations.

1. Our research grants have grown from year to year. We have now awarded a total of 46 research grants totaling over $4,000,000.
2. Senior members of the Metastasis Research Society guide our Scientific Review Board and serve as our scientific advisers. We have presented posters and presentations at many scientific conferences..
3. We have over 19,000 Facebook followers and over 4,000 Twitter followers.
4. In 2015, we embarked successfully on our METAvivor Sea to Sea (C2C) campaign, a cross-country caravan that raised awareness of MBC, and enabled us to meet with breast cancer researchers and MBC patients. The 2018 Sea to Sea campaign is currently in progress.

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.

  • Who are the people you serve with your mission?

    Metavivor serves men and women living with metastatic breast cancer.

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

    Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person), Suggestion box/email,

  • 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,

  • What significant change resulted from feedback?

    In 2020, Metavivor added some proactive inclusion initiatives to be sure we are 1. serving all races and locations of people in the US that have a diagnosis of MBC and 2. Released a special RFP for research specific to Health Disparities in MBC research to encourage specific scientific research to determine why people of color have poorer outcomes than Caucasian patients.

  • 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?

    We have increased participation by all races of people living with MBC.

  • 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 people’s interactions with us (e.g., site, frequency of service, 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, We ask the people who gave us feedback how well they think we responded,

  • What challenges does the organization face when collecting feedback?

    The people we serve tell us they find data collection burdensome, It is difficult to find the ongoing funding to support feedback collection, Staff find it hard to prioritize feedback collection and review due to lack of time,

Financials

METAVIVOR RESEARCH AND SUPPORT 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
  • 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.

METAVIVOR RESEARCH AND SUPPORT INC

Board of directors
as of 10/20/2022
SOURCE: Self-reported by organization
Board chair

Dian "CJ" Corneliussen-James

METAvivor Research and Support

Term: 2015 -

Dian Corneliussen-James

No Affiliation

Kelly Lange

No Affiliation

Arti Santhanam

No Affiliation

Stacey Kruckel

No Affiliation

Kirthikar Anantharam

No Affiliation

Virginia Elizabeth Fairchild

Aaron Price

Rhonda Howell

Patrick Quinn

Terlisa Sheppard

Michael Kovarik

Pamela King

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 10/20/2022
info Candid has made improvements to the race and ethnicity options.

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

Leadership

No data

Race & ethnicity

No data

Gender identity

 

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 10/20/2022

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 employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We disaggregate data by demographics, including race, in every policy and program measured.
  • 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 use a vetting process to identify vendors and partners that share our commitment to race equity.
  • We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
  • 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.