I attended a Metastatic Breast Cancer conference back in April in Philadelphia hosted by Living Beyond Breast Cancer. It was a memorable experience for many reasons. The most notable was that a new movement was born from that conference.
MetUp is the brainchild of fellow mester Jennie Grimes. As was the rest of us, Jennie was sick and tired of watching our friends die while the public at large and our own government does nothing and wanted to begin a movement that will rattle cages and make people stop and rethink research priorities.
Also, during that conference, Beth Caldwell put her admiration of the women’s sufferage movement into a modern action. We were going to ‘Die’ at the conference. We gathered 110 women and laid them down in the hallway and a moving ‘eulogy’ was read. Not just any eulogy but one that told of our anger and distain for the lack of any real progress toward a cure and that losing 113 people every day was unacceptable.
Since that day we began working tirelessly to stage another Die-in that, we hoped, would get more attention and really rattle bigger cages. Washington DC was that cage. Through the efforts of many but specifically the core members of MetUp, meetings were set with some key members of Congress and the plans were being made to host our first Die-in as an advocacy group.
Yesterday, folks began to gather on the West lawn of the Capital. Signs were brought of loved ones lost and those that couldn’t attend.
The buzz in the air was that of emotion and excitement. Meeting people that I only knew on-line and putting faces with names was so surreal. And they were just as excited to meet me as I was to meet them!
Papers with numbers were handed out in preparation of the Die-in. People began to get into groups and Paige Rosllio sprung into action. Immediately, Paige began to take charge and call out groups of numbers. It was really happening.
When every last person was in place, Beth, Paige, CJ Corneliussen-James and myself stood near the fence adorned with posters of every one with metastatic breast cancer living and dead. And it began…at the stroke of Noon.
After a brief thank you to all in attendance and reading the MetUp Mission Statement, I introduced Beth Caldwell. Beth’s speech was inspiring, devastating but most of all, from the heart. Those laying down were quietly sobbing.
I then introduced CJ Corneilousen James, Co-founder, President and Director of Advocacy of METAvivor. CJ spoke of METAvivor’s mission and why it’s so important to advocate for more research funding for Metastatic Disease of all cancers.
Then we died.
Paige Rosllio read our eulogy just as she did in Philadelphia. There was a moment of silence and then we all sang “The Circle Will Be Unbroken”. Paige rang a bell 113 times for the number of people that would die that day and every day while there is no cure. After thanking everyone for coming, the Parks Department and the District of Columbia we came together to hug it out.
It truly felt like an historic event. All of us coming together for a cause we all feel so passionately about and making it happen was electrifying.
There were meetings with lawmakers on the hill that afternoon. They are going on the rear of the week. Those still in DC really feel they are getting thru to the lawmakers that can make this change everyone needs. Asking for 30% of funds going to Metastatic disease is NOT unreasonable. It will make a huge impact.
There will be more Die-in’s going forward. We will keep making noise and speaking our truth until we are heard and the changes we need are made. We won’t stop. We can’t stop.
If you’d like to keep on top of what’s happening with MetUp, please follow their website: metup.org, or their Facebook page
Thanks for oganizing this group and this event. I watched the Periscope video of the event and saw my wonderful wife ‘die’ with you. The most moving part was the realization that, like my wife, most of the participants are Stage IV. Besides the emotional toll this must take, for them to all travel and participate while going through treatment is amazing. Words cannot express my admiration for you all.
Thank you. We were very pleased with the turnout and the success we had on the hill with legislators. Everyone was very agreeable to our push for 30% of funding to be allocated to metastatic research. So pleased your wife could join us and that you could watch.
Action oriented at its best.
Thank you so much Wendy!
Congrats on taking this issue head on in such a moving and powerful way.
Thank you, Pat. We have only just begun!
I wish I could have been there too! But, you all did such a wonderful job and I hope the momentum will continue. Thank you!
There is always next time. I’m confident there will be others. Thank you for the support! Xox
I am so proud of you guys. Love you all. xo
Thank you Nancy! We love you too! Xox
If stage III’s are welcome I will be at the next die-in. I am a true believer in 100% to stage IV research. 30% is not even enough!
Caroline, we are an INclusive group not EXclusive. You need not even have cancer at all to be a part. All we ask is that you are very passionate about the need for more research funding for Metastatic Disease and committed to call those out for the sexualization of breast cancer. Men, women, children and pets are welcome.
I am sorry you guys have to do this but I want to thank you from my heart for doing it because these changes will help all of us. I got emotional reading this post because I’ve lost some family members to metastatic breast cancer. I miss them. So thank you for trying to make a difference. I hope to be able to be part of the next one.
You are very welcome. We wish we didn’t have to do this either but clearly action needs to be taken. We hope one day no one needs to worry about metastatic disease. If not for us then maybe our children.
I so hope I can attend the next one. I am so proud of you guys. This is amazing.
Xoxox ox. You were missed.
Hate the reason that makes this necessary, but love, love, love the action. Am tearing up just reading about it. Hope I get to meet some of you in person, too. xoxo, Kathi