Why not join an established advocacy group?
I started the group because of the number of people on Inspire who felt that they wanted to do something about funding, recognition and awareness of metastatic breast cancer. To be quite frank because I am fed up to the back teeth with the Pinkness of breast cancer which excludes mets, except as a number of deaths to quote to get people to donate money. Where does all that money go? Early Stage / mammogram / survivors / education about symptoms … how exactly does that help those of us with mets?
We are not the ‘survivors’ that BC charities would like to acknowledge. We cannot say we have been a survivor for X number of years, but we have been surviving for X number of years. For us there is no ‘life after cancer treatment’; no ‘returning to normal life’. We are the Pink Paralympians to the Pink Olympians. We can be brave, dedicated but we will never quite be complete in the eyes of a lot of the world.
Personally I feel that BC charities seem to be too beholden to corporate sponsors which include drug companies. Some of these charities raise millions and spend 40% on admin! Are they charities? Or cushy jobs for the ‘right’ kind of person who wants to make a career in the charities industry; because that is what they seem to have become. It is no longer a vocation to work in the voluntary sector, but a career move for those who give lip service to the volunteers who do so much work for them without payment. Charity no longer begins at home, it begins in the boardroom.
IMBCA is not an organised group as such, and should members wish to they can align themselves with national groups they can do so. But what these national groups don’t seem to understand is the anger and frustration at the ground roots of those with this killer disease. People are dying and no one is writing pretty obits for them about what they did for a charity. Some of us don’t have the money to ‘do’ charity work, we are trying to keep not only body and soul together, but a roof over our heads and food in our stomachs. We don’t have time to ‘lunch’, or throw posh fundraisers. We don’t know celebrities who really seem to do charity work for a bit of self-publicity rather than any real conviction (oh yes, another film due out?). Too many charities are about Branding, Corporate Image; style before substance. I am angry that they don’t seem to want to shout out about what is happening to us because we are not a money making opportunity, we are people.
There are constantly press-releases about break-throughs in research which then seem to go no where because a supplement cannot be patented. Nothing seems to come of all of this.
Your money or your life? It seems that too many are only interested in the money.
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