METAvivor Advocacy in 2021

BY Barry Lenk, METAvivor Director of Advocacy


METAvivor Advocacy in 2021

By Barry Lenk, Director of Advocacy

Edited by Barbara Bigelow

After Chera, my partner of 13 years, was diagnosed with metastatic breast cancer in April 2018, I researched as much as I could get my hands on about her diagnosis. In doing so, I learned about Metavivor. I had previous experience leading volunteer advocacy programs in other nonprofits, so I began volunteering with Metavivor, first making visits to legislators’ offices, then helping to organize the Stampede, and in 2020 as a Board member and Metavivor’s Director of Advocacy.

Because of COVID, this year’s Stampede posed a greater challenge.  Instead of in person training, Metavivor had to pivot to a virtual Stampede, with a greater reliance upon Zoom sessions for training and by posting informational materials on Metavivor’s web site. We approached this challenge with some trepidation. For the first time, Metavivor recruited State Captains to help organize and coordinate contact between volunteer advocates and legislators from the state. Metavivor recruited 42 state captains last year and had a record number of registered volunteer participants. This year, Metavivor is expanding its advocacy program to include three campaigns. The first took place in March, when Appropriations Committees consider how much money to recommend for medical research. The second campaign will be in June, when Congressional Committees will consider bills to provide greater financial assistance and support for people with metastatic breast cancer. Our third campaign will repeat our traditional Stampede, which urges Congress to pass these measures into law.  

Meanwhile, Metavivor is working to expand its grassroots presence around the country with the goal next year of having a year-round advocacy effort. There is a great deal of interest on Capitol Hill and at the National Cancer Institute in the issues that are priorities for Metavivor. This is a promising time to build upon the progress that we have made. If you would like to be a State Captain or Co-Captain, reach out to [email protected] and we will provide training. Your MBC voice matters!

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