Wednesday, June 19, 2013


How about you?  Part of what's been happening behind the scenes has been THIS!  METAvivor is now seeking nationwide volunteer support.  I hope everyone who reads this blog knows I only support those efforts I believe have the potential to change the present landscape.  METAvivor is near and dear to my heart.  Please read CJ's message and if you are interested, email her at the address listed below.

I'm quite thrilled to announce that I have agreed to coordinate the efforts of NYS.  It's a big state and what may work on Long Island will likely not work in NYC and definitely won't work upstate.  Actually, it's quite disturbing to say that not too much works on Long Island.  Everyone has their own coalition or non profit.  TOGETHER we are stronger, folks.  We Must Work Together.

My only footnote?  Scorchy and Upstate AM, you are already on my list.

For everyone else, no matter where you may be located, if you are interested in contributing any assistance for whatever time you may be able to spare, do contact CJ.  This is in the early stages so please be patient.  We will shake things up. Disruptive to be constructive.

Are you with me?

Add on:  CJ just emailed me to remind me that NY, NJ, Puerto Rico and the US Virgin Islands are all part of my area.  I did know that, I got a little color blind reading the map!  PLUS.....  This is waaaay cool....  See that news feed to the right of your screen.  It changes.  Just now, there was a story about "Advanced BC Community" so I clicked.  Look what I found!  It's CJ in an interview for a New Orleans TV station:

Join the effort to raise awareness and achieve proportionate funding
for metastatic breast cancer research

METAvivor Research and Support is a 501(c)(3) all-volunteer, patient-founded and led non-profit organization devoted to a) raising awareness of metastatic breast cancer (MBC), b) funding critical MBC research and c) promoting the concept that 30% of every organization’s  breast cancer research funds should be devoted to MBC research.  These are the facts:

·      30% of all breast cancer patients metastasize

·      97-98% of all metastatic breast cancer (MBC) patients succumb to the disease

·      Annual MBC losses in the US average 40,000, including about 500 men

·      2% of US cancer research funds go toward metastatic cancer research

·      Significant progress won’t happen at 2%, but will happen with proportionate (30%) funding

THE RESEARCHERS:  Several hundred brilliant career metastasis researchers, members of the Metastasis Research Society, remain dedicated to the stage IV research despite immeasurable obstacles.  Obstacles include a horrific lack of funding, a large cancer community focused almost exclusively on prevention or early detection, a prejudice against stage IV cancer research overall and an unwillingness to change the status quo.  Our lives depend on getting their proposals funded.

1st:  We want 30% of all breast cancer research funds dedicated to MBC research.  

2nd:  We want to see out-of-the-box research funded -- research that will extend our lives by years and decades, not weeks and months as is presently the case.

3rd: We want our disease rendered a controlled, manageable condition, such as diabetes or HIV – so that we can live long, happy, productive lives.  We can achieve this with 30% funding.

THE PLAN: METAvivor is launching a nationwide effort to raise awareness of our disease and to convince the public and our policymakers that the funding of metastatic cancer research must be increased to 30% across the board.  We are establishing 10 regional teams, with representatives from every state.  Four regions are already started.  Now we are going public and asking for volunteers.

JOIN our effort.  Patients, family members, caregivers, friends and others supporting our cause are welcome.  Give us your talents, your passion and whatever spare time you have.  Be part of a solution that will give back life to countless persons with MBC.

Want to know more? Send your name, email, phone number, city and state to


  1. Metavivor couldn't have a better advocate than you! Congratulations on your new role - I know you will be doing great work and making a difference. #proudofyou

    1. :) Thank you Marie! It's time to really make a difference for those with the most urgent needs.


  2. Thank you, thank you!

    Not sure how I can help, but I'm in.

    Already emailed CJ.

    1. I'd say you are already helping with Mets Monday to raise awareness which is a huge part of the problem. Preaching to the choir if I say to **you** that people want to sweep the needs of the mets patients under the ribbon.

      Grateful for your friendship and your support and everything you do!!


  3. Any international plans? Metser in Israel here.

    1. Absolutely! CJ and I were already talking about this earlier. The problem is global and the solution will be GLOBAL, too. Definitely email CJ!


  4. Seen this on Facebook on Monday, got my email out to CJ yesterday, she responded this morning. So excited to finally have a place in this battle that I can help with the fight, and my possible cure, with more $$$ going to research.
    I am so ready to representative TEXAS.
    My Mother who lives in Rochester, NY, Upstate, will help you in anyway when you are ready to rally people for NY.
    WooHoo, Lets Go.
    With Love From Texas

    1. YAY! The more people who are ready to help, the easier this will be to accomplish.


  5. This is wonderful... you all amaze the hell out of me. I'll write CJ to see if I can do anything in Canada. Thanks AM... xo

    1. :) Thank YOU!!! And yes, Canada is included. Very excited to roll up my sleeves and get to work.



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