How do we get involved?

Is there really anything that I can do to really get Metastatic Breast Cancer at the centre of the breast cancer community?  I seems to be a daunting task but I think it is one that can be achieved.  I think, maybe more like hope, that the world is getting a bit more real about what matters in life.  I think that many people are starting to look past the superficiality of the ‘Pink Ribbon’ and question where all the money and effort has gone.

The solution to me has to start at grass roots with ordinary people.  Not with the executives, movers and shakers, or the big donors who want things done their way.  When was the last time that you heard of a non-profit actually asking the opinion of their volunteers?  Those people who go out with the collecting tin; those people who do the things that make an organisation work?  I appreciate that someone has to be in charge and there are those who need to lead and set the pace and direction for others to follow, but they should not be doing so blindly and without taking into account the thoughts and ideas of those who really make an organisation what it is.

Communication is what makes an organisation work well, and those who contribute deserve more than an annual report of what has been done, but the explanation of why these things have been done.  If an organisation expects support they should justify why they want that support, and why they are going in that direction.  I guess it comes down to accountability.

I started a facebook group called Inspired Metastatic Breast Cancer Advocacy http://www.facebook.com/groups/InspiredMBCAdvocacy/ which is a grass roots movement to do something to address the invisibility of MBC.  It is new, but it does give members the opportunity to put forward ideas and actually do something to help, even if it is as simple as signing a petition, or writing to a newspaper, posting on a page to raise awareness of MBC.  We are trying to organise a Quilt project to remember those we have lost, along the lines of the AIDS Quilt.

Then there is METAvivor http://www.metavivor.org/ who raise money for MBC research.  They started in the Annapolis area, but are looking to go national across America, so if anyone is interested they would love to hear from you.  Click on ‘get involved’ tab at the top of the home page.  It is run by volunteers and all the money goes to funding research.  Their accounting and procedures are transparent (http://greatnonprofits.org/organizations/browse/search:METAvivor) which is more than can be said for many more high-profile breast cancer non-profits.

The Triple Negative Breast Cancer Foundation http://www.tnbcfoundation.org/ who are celebrating an Inaugural Triple Negative Breast Cancer Day on 3 March 2013, or 3, 3, 13.  http://www.tnbcfoundation.org/tnbcday/index.html so have a look and see if there is something that you can contribute to this day, and also if there is an event that you can organise or volunteer for.  If the second link doesn’t work click on the event name just to the left of the picture at the top of the page.

There is also the facebook page http://www.facebook.com/IAmTheFaceOfMbc?fref=ts I Am The Face Of Metastatic Breast Cancer which was started by June Rheingrover where I have posted information about some of our Lost Inspiration, friends and members of the Inspire forum, with the purpose of giving a name and a life story to those we have lost.  For me this is very important.  However the page is more that just that, it is about those of us who are living with MBC, because each one of us is the Face Of Metastatic Breast Cancer.  Check it out.  As you will see the page author has some wonderful news about something that has just happened in her own life.

Can anyone think of any other ways that we can raise the profile of MBC?

 

3 Comments

  1. Theresa Palomares

    I think with all the funding issues and us not getting our fair share really doesn’t equate to much if we are not even seen as a viable interest, yet the scientific community is on the right path with more in depth DNA markers in study to find out what makes these ticking time bombs erupt but it is a catch 22 because they need funding to continue especially with all the public monies being cut here in the USA with all of our politico agendas……so to be heard, I believe we must gather together to attract the media’s attention instead of standing alone-a lot of women were very brave this past Pinktober in going out alone to face the media on their own and most were accepted with a positive energy and a willingness to help but some were not as fortunate as their stories were misconstrued and twisted to fit the the editor’s needs. I had hoped that our Quilt project would have had more support by now than just a few handful of supporters as this would have been a great tool to gather at a public ground or State capital steps in gaining further insight into the MBC’ communities needs but what we don’t have is time-we do not have time to wait for our designated month and I for one believe that with May being cancer research month, we should show our efforts to be heard as research is what will pave the way for us and not early stage cancer prevention and vaccines. Wouldn’t it be cool if we could all stand together with each group holding a sign, what kind of impact do you think that would have? What would the early stagers think? How would they react? It would def have a monumental impact on educating the masses on the different sub types of breast cancer-Luminal A, Luminal B, Basal Type, Her-2, Men, etc…

  2. Once I have my Inspire members project done I will be getting on with some quilting. I have all the stuff I need now and just need to get started. I am determined to finish the members project first …

  3. Laura Wells

    I have started a non-profit organization called STAGE IV LIFE Metastatic Breast Cancer Foundation. Our goals are to raise funds, of which 30% WILL GO TO RESEARCH, to raise awareness of metastatic disease, and give financial and/or material aid to metastatic patients as needed. We are brand new, and raising funds, so we can start doling them out. We have a Restaurant of the Month Club, where we choose a different restaurant each month, who agrees to donate part of patrons bills to our cause, and are having a fundraising brunch in October. I am trying to speak to newspapers, my city council, at cancer dinners, etc. I have made my first brochures, started a fb page, and have a website pending. I am doing all I can to bring attention to our mets group, within the breast cancer community.

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