Disease, Disorders, Medical Disciplines

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.

Ruling year info

2009

Executive Director

Sonya Negley

Main address

1783 Forest Drive, #184

Annapolis, MD 21401 USA

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EIN

37-1578088

Cause area (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

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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 cancer

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

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 cancer

Related Program

Research grant funding

Total number of grants awarded

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

People with cancer

Related Program

Research grant funding

Charting impact

SOURCE: Self-reported by organization

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

What is the organization aiming to accomplish?

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.<br/><br/>Our goals are to:<br/>1. Fund an increasing amount of metastatic breast cancer research every year.<br/>2. Fund innovative research that move us forward toward finding better solutions for metastatic breast cancer patients.<br/>3. Increase the amount of MBC awareness every year.<br/>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.<br/>2. Work closely with the Metastasis Research Society to identify the most promising, out-of-the-box research proposals for funding.<br/>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.<br/>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.<br/>3. We have a strong and growing social media presence, and are frequently asked to be guest speakers at events worldwide.<br/>4. We have worldwide interest in our organization and have begun a formal program to incorporate these individuals into our operations.

1. Progress will be measured by the amount of funds given and the quantity and quality of follow-on research that initial research prompts.<br/>2. Progress will be measured by the quantity and quality of the researchers we attract and by whether or not we are perceived as knowledgeable patients from a scientific perspective.<br/>3. Progress will be measured in terms of followers and the subsequent increase in volunteers we generate.<br/>4. Progress will be measured in terms of the spread of our operations and and any increase donations to our research fund.

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.

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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METAVIVOR RESEARCH AND SUPPORT INC

Board of directors
as of 6/18/2019
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 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

Keywords

metastatic, metastasis, breast cancer, research, awareness, support