After being diagnosed with Stage IV, Metastatic Breast Cancer (OVER THE PHONE! ) I was given little information about my condition. Immediately after being discharged from the hospital, determined to be proactive, I began to comb the internet to educate myself about my illness. I knew that the only control I would have over my situation would be to arm myself with knowledge, and to stay up to date on the latest and greatest available pharmaceuticals and on going MBC research.
Isolated and forgotten does not begin to describe the way I felt when I discovered the lack of resources available. Not only was there little information to be found about MBC, but I soon learned how sorely underfunded MBC, and metastasis research across the field, is and how pitifully it is represented in the breast cancer community. It wasn't until I discovered METAvivor.org that I found others like me, people who were living and thriving with metastatic disease. I have since made it my life's work to educate and empower others. What a legacy I will leave behind through outreach and my work in the world of MBC advocacy.
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Please read on to learn more about METAvivor.org (Following text taken from the METAvivor web page)
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 IV research, METAvivor remains the sole US organization dedicated to awarding annual stage IV breast cancer research.
METAvivor exists to sustain hope for those living with metastatic breast cancer (MBC). Passionately committed patients ourselves, we rally public attention to the urgent needs of the MBC community, help patients find strength through support and purpose, and make every dollar count as we work with researchers to regain longevity with quality of life.
We bring attention to the specific issues of stage 4 metastatic breast cancer, and raise public awareness about the facts of the disease. With 30% of breast cancer patients metastasizing, our goal is to see to it that 30% of breast cancer support and funding for research is dedicated to metastatic breast cancer.
METAvivor awards research grants to individuals with a clinical or other doctoral degree who are actively engaged in areas of metastatic breast cancer research and whose proposals show distinct promise in making a different for the stage 4 breast cancer community. . The goal of our funding efforts is to transition metastatic breast cancer from a terminal diagnosis to a chronic, manageable disease with a decent quality of life.
OUTREACH & EDUCATION
METAvivor’s regional ambassador program is dedicated to raising awareness about metastatic breast cancer and conducting fundraisers to support METAvivor’s metastatic breast cancer research grants. Our ambassador program is constantly growing, and we plan to expand overseas in the near future.
METAvivor began as a support group in Annapolis, Maryland, for local people living with metastatic breast cancer. Although we have evolved to focus primarily on public awareness and raising funds for metastatic breast cancer research, we know that a community of support is one of the most basic needs for anyone facing metastatic cancer. We encourage those living with MBC to establish support programs in their communities.
METAvivor is run entirely by volunteers, most of who are living with metastatic breast cancer. Although we do not pay any salaries, we work to obtain grants and corporate sponsors to support our operational expenses. This allows us to ensure that donations can be entirely dedicated to our research grants that fund the cutting edge research that will ultimately save lives. Unless otherwise specified by the donor, 100% of every donation and 100% of proceeds from every fundraiser (after event expenses) goes into our research grants.
With Senator Chris VanHollen of MD.
With Congressman Walter B. Jones of NC.
Addressing attendees during Capitol Hill Day.