Komen Shuts Down Other Opinions

from politico.com

Yesterday I wrote about my utter astonishment in the “Singing Mammogram” released by Komen. A quick read of Twitter, as well as comments on my blog, suggest I’m not alone. In fact, it would seem that enough people offered negative feedback on the YouTube page that Komen has turned off the comments.

As the president of another breast cancer organization, I readily recognize that not everyone will agree with me, or with our organization’s take on the issues. I know that there are many opinions. I also know that I’m pretty strong in stating mine. I don’t tell people that they were wrong, but rather that I disagree. I don’t eliminate opinions I disagree with. And I most certainly never, EVER, no matter how confrontational or oppositional a comment, fail to invite open discourse on my blog.

As amazed as I am that Komen approved such a demeaning and sexist video, I’m even more amazed that they have sought to avoid dialogue by simply ignoring the voices of anyone who doesn’t support them.

Is this really how a leading breast cancer organization should behave? How will shutting down our voices lead to “the cure?” What say you?

OUTRAGE!

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In 2012 METAvivor launched it’s “Elephant in the Pink Room” campaign to highlight that despite pervasive awareness of breast cancer thanks to both legitimate awareness campaigns and “Pinktober” marketing, what we still try to ignore is the reality of getting, living with and dying from metastatic breast cancer.

This morning I discovered that the campaign was essentially stolen by Kohl’s Department Stores to “fundraise” for Susan G. Komen and I am truly outraged! (Find the Kohl’s Cares campaign here.) First and foremost, it is disgusting that Kohl’s would impinge on a small non-profit organization’s pre-existing campaign in such a blatant and unethical manner, and do so to sell more products (like their “pink elephant” necklace) and direct “charitable” dollars to another, behemoth of an organization.

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#BCNext

We are constantly confronted by “breast cancer marketing,” the barrage of pink, from funding free mammograms and research, to supporting individuals with cancer, some of whom can’t even afford child care and transportation to treatment. We range from those with strong family histories, whether BRCA positive or not, to those enduring treatment, to long-time survivors with metastatic breast cancer, to those we have loved and lost. We are each the face of breast cancer.

In America, and I presume elsewhere, there is a great divide between those of us on the ground, living with and dying from cancer – and the other side of breast cancer, those who make funding decisions and allocations of both donated and allocated dollars, private, public and NGO.

If you could have their ear for a moment, if you could tell them what YOU think, what YOU see, what YOUR breast cancer priority is? What if your voice, combined with others like you, like me, could help influence our future?

Comment below or tweet to #BCNext to join the dialogue and spread the word! Let your voice ring out!

Beating a Dead Horse

For most of us the days of being told how to live our cancer journey fell away when our treatments were over. Gone are the frustrating moments when well-meaning friends and strangers at Starbucks offer remedies, alternative therapies, and all manner of unsolicited advice.

But when you have mets, those opportunities keep on giving, until – well, until the treatment ends, and we all know when that is. Never.

So you can imagine my frustration by the wave of Good Samaritans, breast cancer survivors all, who seem to think that because they once had early stage breast cancer they are in a position to advise me about mine.

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LIVESTRONG

I mentioned in my last post that there are two things I find particularly upsetting about the Lance Armstrong affair. The first is what it means for my son to have deal with a  fallen hero. The other has to do with LIVESTRONG, an ironic name for an organization founded by a man who, in the end, lived weak.

Eight years ago my mother-in-law died of mesothelioma. She was buried with a LIVESTRONG bracelet. LIVESTRONG has been a favored charity of ours as well. Neither she nor I ever benefited directly from their services, but we believed in the work of the organization.

I do not personally believe that Armstrong’s actions reflect on the organization he founded, most especially since he has put distance between the two, presumably in hopes that his good works can overcome his exceedingly poor judgement. I believe we can only condem LIVESTRONG based on its own actions, even as I believe it would be wise for LIVESTRONG to continue to grow the distance between itself and Armstrong.

Here’s my issue: I, along with many others in the breast cancer blogosphere, have called a number of cancer non-profits to task. Komen, NBCC and others have been reviewed critically. As they should be.

But it occurs to me that I’ve not heard much in that regard when it comes to LIVESTRONG, which begs the question: has LIVESTRONG been exempt from scrutiny because of their affiliation with an American hero?

I honestly don’t know, but I speculate that all the “feel good” around both the man and the organization may have clouded our vision. That’s not to say LIVESTRONG‘s reputation is unworthy, or that it is anything short of the wonderful organization it purports to be. Only that a close look is in order. If they are clear in their mission, true in their leadership and  appropriate in their spending, I imagine a careful look would serve them well.

NaBloPoMo 2: A New Low in Pink

I know, it’s supposed to be over. But anyone living with, or loving someone with, breast cancer knows it’s never over. Pink-tober may be more offensive than the other 11 months of the year, but breast cancer is always around, whether it’s front and center, or lurking in the dark.

November is always a relief for me. I am happy to hand the pink spotlight over to the Movember crowd and just crawl into a hole for a while. But on the VERY last day of October, THIS was brought to my attention. (You have to see it to believe it!) Pink Lemonade Spot

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