I joined METAvivor in May of 2015, having just made waves with a virtual social protest that put the METAvivor hashtag, #dontignorestageiv, on the map. It was trending March 2nd in the number two spot on Facebook and Twitter. I had used the trademarked METAvivor ribbon over the top of my photo, along with the trademarked hashtag, and they both went viral. Needless to say, this gained some attention for the organization, as well as myself as an advocate, but I later received calls that day from both then President, Lori Marx-Rubiner, and founding member Dian “CJ” Corneliussen, wanting to know who I was and what I was trying to accomplish. The events of that day pretty much set the tone for the rest of my time at METAvivor.
CJ later asked me to volunteer for the second week of the second leg of the inaugural Sea to Sea for MBC tour, beginning in Houston. We finished that leg of our journey in Kansas City. I had apparently made an impression and CJ certainly was impressive to me. I was asked to join the METAvivor board and was voted on as a Director of Outreach by June of that year. I continued to volunteer where I could, literally throwing myself into my advocacy work. It was easier, at the time, to focus on METAvivor in spite of my poor prognosis. METAvivor became my passion, my drive, and I believe to this day, the METAvivor mission is the only hope I have...we all have...of someday saving our lives..the lives of those with metastatic breast cancer.
By January of 2016, I was nominated and voted into the Vice President position, and finally the Presidency of METAvivor in January of 2017, where I served in that roll for a two year term. We accomplished a lot. I was then re-elected in 2019 for an additional one year term. Historically, I’m more of a “beg forgiveness than ask permission” kind of gal, and I have really pushed the boundaries of our organization. What I brought to the table were my "out-of-the-box" ideas and an ability to build connections in unexpected places. I used my skills as an artist, thinker and entrepreneur, along with social media marketing, to bring METAvivor into the spotlight. Everything I did, from Glamour, O Magazine, People, to GMA and the Today Show, I took METAvivor with me and expressed our mission to their audiences. I told every audience, every show host and anyone else who would listen that I believe that research is the only way to change our stories and future. I made that the forefront of every advocacy opportunity I was ever presented.
We’ve also experienced some growing pains at METAvivor over the last four years. Just like there are things that divide the MBC community, the METAvivor board of directors don’t always agree on every tactic or strategy, but that is what makes us so effective; We are a true representation of the MBC community as a whole. We have a very diverse board with very diverse backgrounds and each individual offers different perspectives. We talk through things to get to the best conclusion for the organization. Disagreements are settled by votes; votes that always lean in the direction of the MBC patients who serve on the board. I may not be everyone's cup of tea and I have never looked the part of someone you would expect to see in a leadership position at an organization like METAvivor, but I have led the organization from the heart, made significant accomplishments and I will continue to give 100% of what I have to offer.
As my term as president has come to an end, I am both relieved and saddened to be passing the baton to our newly elected President, Michael Kovarik. He is more than capable to usher METAvivor into 2020 and beyond and I am thrilled to work with him as Immediate Past President and support his vision for the organization as a whole. As a male with MBC, Michael brings different skills and talents to the table. I am so proud to know METAvivor continues to put unexpected people and out-of-the box thinkers in leadership roles. It is the unique perspectives and deliberate inclusion of patients, and other leaders from the metastatic breast cancer community, that make our organization great.