Monday, August 13, 2012


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Got the picture?  Those who have metastatic disease are counting on ......   yes.....  RESEARCH.  Research is their best hope.  It's up to us to help.

CJ is one of the founders of an organization called METAvivor.  I met CJ when I attended the NBCC Advocacy Summit.  If you've been along the ride with me, you may remember I was completely taken by CJ's charm and grace and kindness and warmth.  The website is filled with all sorts of information about metastatic breast cancer.  The organization is volunteer run and all money.. ALL money ...... let me just repeat that one more time for maximum impact:  ALL MONEY donated to METAvivor is used to fund ......  research.

METAvivor holds three of their own fund raisers each year.  There is one in September and if you are in the area of Annapolis, MD and have a few hours the afternoon of Saturday, September 15, perhaps you would like to attend their author's luncheon.  Information about the event can be found here.

If you are not in the area and you wish to make a donation OR, if you are having a fundraising event, perhaps you might consider including METAvivor as one of the organizations you might donate a portion of the funds raised at your own event?

From the METAvivor website:


METAvivor began its research fundraising initiative in 2008, while still a small support program called Compass. In it's first year it sold metastatic breast cancer awareness pins, had yard sales, then an organ concert and Holiday Home Tour.  

Today METAvivor has three annual fundraisers -- an Adventure Race in April, an Authors' Luncheon and Silent Auction in September and a Holiday Home Tour in December. While these fundraisers contribute toward our research grants, they alone are insufficient for the research we need. Donations and third party fundraisers go a long way toward making our grants possible.


Third party fundraisers are critical to our metastatic breast cancer (MBC) research grants.  Whether your fundraiser makes $10 or $100, $1,000 or 10,000, or $100,000 or more, 100% of it goes into our MBC research fund.  

PUT ON YOUR OWN FUNDRAISER.  Third party fundraisers have included, to name a few, restaurant dinners, bowling tournaments, dances, Tupperware parties, fashion shows and race participants asking family and friends to donate to METAvivor in honor of their efforts.  

ASK AN ORGANIZATION TO DESIGNATE METAVIVOR A FUNDRAISER RECIPIENT.  A significant number of organizations are philanthropic in nature and raise funds throughout the year to make donations to various charities. Rotary Clubs, churches, schools, social clubs, and other groups often raise funds for worthy causes, donating to different charities each year. In addition, stores often agree to donate a percentage of their proceeds for a day, a week or a month to a specific charity that appeals to them.  

METAvivor welcomes your assistance in finding new sources of funding for metastatic breast cancer (MBC) research. METAvivor is the only organization that solely funds MBC research and that puts 100% of all donations and fundraiser proceeds (after expenses) into MBC research grants. METAvivor is a 100% volunteer organization, making it possible to focus incoming funds where they can do the most good -- toward saving lives.  

For more information on fundraising, please contact our Chief of Fundraising.  

One more word from me.  Metastatic breast cancer is what kills.  Metastatic breast cancer is why Jenny died a few weeks ago.  Metastatic breast cancer is what silenced Rachel's voice and Susan's voice.  Metastatic breast cancer, in fact, is what killed Susan Komen.  What exactly WAS that promise?  To stop women from dying?  If so... the only way that is going to happen is if we begin funding better research.  I'm not sure what Komen is doing with their billions but I do know what METAvivor is doing with their funds.  No one is taking a salary.  All funds. Solely.On.Research.

(Not an afterthought but what happens when one is attempting to type coherently at 2AM... But, Metastatic Breast Cancer is why Angelo Merendino is a widower at age 38......  )

I attended a wake on Friday evening for a woman whose life was cut short far too soon.  Yes.  Metastatic Breast Cancer.  It breaks my heart every time I hear of another death.  It hurts me to know someone else's mother, sister, daughter, friend has been stolen by this disease.

Poke around the website.  October is approaching.  Those holding fundraisers who have not yet designated where their money is going, please consider sending a portion to METAvivor where you can be assured the funds will be going right into the hands of the researchers.

For my sweet friend, C..... May your mom, CL, rest in peace.


  1. LOVED this post. Yes, RESEARCH is the operative word here. I, too, am tired of hearing about another person who dies from this awful disease. I've lost too many people, too. It's time for us as a society to think about where our donations go.

    1. Thanks, Beth..... I hope you are having a great summer!

      We need to help those in need and we NEED to fund research.... It IS that simple but we've made it very complicated.....

      Hugs to you...

  2. (Warning: Contains Language)

    I have metastatic breast cancer and research is everything to me! I am so angry about the lies about mammograms, the statistical lies of survival rates, and the emphasis on "awareness" that is the primary priority of SGK. I am entirely fucking aware that I am going to die. I am aware that being triple-negative means that I have a shitty prognosis and most advances made in breast cancer are for other people (congrats HER+ folks.) The most common thing people say to me is that they hope I live long enough for research to find something for me. I hope so too.

    I will understand of you reject my comment because of some of the language.

    1. First, to dispense of "blog business" .... I won't reject any comments due to language. The only comments that I will ever delete are spam (duh)..... and anything that attacks anyone else (now, me included.... I let one guy get away with ONE thing that was particularly disgusting and that was the last time.....). I'm not wasting precious time engaging with people whose mind are so closed that they can't/won't listen to any other point of view. I also do not want this to turn political or religious (aside from people offering prayers.... you know what I mean?).

      Frankly, I'm not bothered by curses and I like the way you were very respectful of this blog and those who visit by adding that little warning at the top of your reply. RANT on.....

      I wish I could do more for you. I hate what is STILL happening. We are NOT going to screen our way to a cure (not my words but I loved them when I heard them) and I believe it is up to those of us who are early stage patients, NED.. whatever you want to say... but I believe it is up to each and every one of us to lend our voices in some way to those waiting for the research to catch up. I promised to do this one day a week on this blog. I don't intend on breaking the promise.

      Thank you for this comment. Thank you for making this very real to those who may be reading and still do not really grasp the reality of mets.

      Sending love, hugs, support....

  3. Hi Girlfriend!
    Prevention, prevention, prevention! Our dear Dr. Love is so right on target. If we had the cause and the prevention, we wouldn't have need for the rest of this Shakespearean nightmare. The Komen saga has morphed into the Emperor's New Clothes. I flat can't believe that the rest of Komen's board and outside advisors don't see what's happening and be firm with Nancy and boot her out the door. We're dying out here, people! Surely there's another country where she could be ambassador, again.


    1. I was reading your blog this morning and got derailed by a mess of nonsense. Going back now...... There is no change in this Komen game as long as NB is in the board room. I'm mean really..... I said that from the moment I read the very first article. Wish I could located the tweet! (I'm clairvoyant.... it the point there... ha!) .....

      Yes..... Find the cause, prevent the disease AND STOP the deaths.....

      I've missed you..... summertime and everyone is scattered!


  4. THANK YOU AGAIN !! We will work for METAVIVOR !!


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