Thursday, February 2, 2012

THE TWIT CONTINUES .....

Well.  I must say that Awareness has been raised.  At long last.  The RIGHT kind of awareness.  Interestingly enough, the Canadian premiere of Pink Ribbons Inc. is tomorrow.  How timely!  In an O Henry kind of a way.  In case your page isn't loading properly and the Pink Ribbons box isn't on the right side of your screen so you can click to watch the trailer, the link is here.

I never tried to hide my commitment to Army of Women.  I joined to get email notifications well over a year ago.  In September, I wanted to do more and I decided to volunteer my time because I appreciate how important it is to fill research studies.  The quicker they are filled, the quicker we can begin to rule out and hone in on some answers.  I want answers.  I want that Deadline clock to actually mean something.  The End of Breast Cancer.

The Komen Twit Storm continues to explode.  I am NOT a reporter so I am not fact checking to the extent that I would like. Information is coming fast and furious.  I'm just going to hit the points that are either very important or utterly ridiculous. Mention of the movie and Dr. Love and The Deadline are all exceptionally relevant to this discussion.

Komen contends they are bound by their own set of constantly reviewed stringent rules to make sure all donated dollars are spent wisely.  And of course, more than safeguarding those dollars, OUR TRUST is of utmost importance.  (As my girlfriend and I like to say when we are particularly irritated with personal crap, "You can't make this shit up!")  The newly enacted stringent rule about funding any organization under government investigation which started this maelstrom?  That was JUST put into place.  The planned parenthood investigation began in September.  What?  Oh, I get it.  Wait until AFTER October ...  let enough time pass so all the pledged monies are collected.  October is The Cash Cow.  Put the new rule in place now, yank funding.  Seems a bit disingenuous to me.  Plus, Bank of America is under investigation.  Why hasn't THAT tie been broken?  I'd really like an answer to that question.  It's NOT rhetorical.  It demands an answer.

Then, there was this little bit of information that I stumbled upon last night.  The INTENSE lobbying that is done by Komen? The information contained in this piece made my blood boil.  Toward the bottom, it specifically mentions the Deadline 2020 initiative of the National Breast Cancer Coalition.  In prior posts which I am not going to link here, I discussed how I wrote to my congressman and his name is now on that bill.  (He is a Republican, just for the record)  There is a comment underneath that publication which was added by Dr. Love last night.  It's time to stop the bickering and start researching. Enough is SERIOUSLY enough.  

There are many more stories out there, FAR too many for me to list.  I just happen to like a little blurb in an article in this publication.  The last paragraph is a tad upsetting and the last sentence, I'll save you the trip, "Maybe Komen should concentrate their granting criteria on whether the recipients are actually helping cancer patients."  To that, I once again repeat my ongoing "battle cry" (sorry about the war metaphor)..... "I am NOT a 'for-profit' commodity.  I am a woman with a breast cancer diagnosis.  Are We Clear?"

What should you take away from all of this?  First of all, JOIN Army of Women if you haven't already done so.  Broken record.... broken record.... but yes, it IS that important and I am seeing the number of enrolled women going up a little each day.  If you would like a quick version of what it means to join, in the banner above the clock at the top of this page you will find "Army of Women" ... click the link, read, join.

What ELSE?  MOST importantly..... WHY is it necessary to donate your money to a "middle man?"  ANY middle man?? Years ago, it may have been necessary to donate to an organization that had the resources to immediately identify where there was a need for funds.  Today?  I think not.  It's 2012.  You can google breast cancer organizations or breast cancer research or whatever combination of words you can think of.  In a millisecond, you will have tons of options.

Donate DIRECTLY.  If this planned parenthood thing has you pissed off, send your money directly to them.  (As an aside, you can specify you want your donation to go toward breast cancer screening and as a further aside, last I checked, in less than 24 hours, $600,000 was donated to planned parenthood from the time this Twit Hit The Fan......So much for the yanked funds.  People stepped up and by now, they may actually have received donations in EXCESS of what was taken away. KaPOW!)

If you want to keep it local, contact some of the organizations in your area.  Ask them how they spend their donor dollars. Is this how you want your money spent?  Send it right to them.  Call the cancer hospitals.  I know, for example, Sloan Kettering has a ton of programs for patients and survivors.  Most of them are staffed by UNPAID volunteers but they do need funds to purchase supplies, let's say, for their "Art Expressions" program.  In the case of MSKCC, they also use donations to fund research.

Want something more high profile?  Contact the National Breast Cancer Coalition.  Ask them what they are doing with your money should you choose to send it to them.  Want to send it for research?  I would HIGHLY suggest contacting the DSLRF (Doctor Susan Love Research Foundation).  They conduct studies.  And, in the spirit of truly working on behalf of all of us, seeking ways to PREVENT the disease, her manner of conducting herself is in the spirit of true cooperation.  It isn't about being The Alpha Dog.  It's all about helping us.  Those of us who are struggling with breast cancer fallout and preventing future generations from ever having to face the choices some of us had to make.

Oh... and her "Army of Women" .....  When she is looking to fill her OWN studies.... she doesn't even dip into her own database to try to fill her own studies.  The Army of Women database was set up for fellow researchers to give them an avenue to connect with interested women.  That's pretty selfless.  At least it feels like that to me.....

And the Twit Storm continues.  This is a case study in a public relations nightmare.  Crisis management to do damage control?  I think too many of us were already annoyed with pink ribbons and being mass marketed.  It was a powder keg. Gasoline was poured.  Komen tossed the match.

From the cheap seats where I sit, contrary to popular sentiment, There Is Such Thing As Bad Publicity.


6 comments:

  1. Twit storm. I like that. Me, I'm calling it a tidal wave and I think Komen might be taken under this time, even if only temporarily. It's really been something watching this unfold hasn't it? Your passion shines through in this post once again. That's why we love you! Well, one reason anyway! ha.

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    1. LOL on Twit Storm.... do you know it took me at least six hours after writing it (and leaving it for another distraction...) before I realized that was akin to that other rhyming storm! There is so much going on with this, my head is spinning.... I think it is going to be a HUGE task for some media pro to "rehabilitate the brand" ...... And I do hope Army of Women, Dr Love, Deadline 2020, National Breast Cancer Coalition and a couple of others are the beneficiaries!

      Just walked in. Going to read everyone's "Points" now!

      xoxox

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  2. LOL "It was a powder keg. Gasoline was poured. Komen tossed the match." You are so right!! How is Komen going to get itself out of this trouble? What kind of PR relations is the organization going to have to resort to. Bad publicity, indeed. I agree with donating money directly to an entity and taking out the middle man. I donate to Sloan-Kettering.

    Thanks for an insightful, informative post.

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    1. I'm so glad you donate to Sloan! Your donations helped me!!!! I was able to participate in a study (partially funded by Sloan) for my chemobrain and enabled me to join their survivorship program which jumpstarted my blogging. I can now say thank you directly on behalf of someone whose life you have helped with your donations. More than than, I am thankful we "met."

      Yes, I had a visual of the explosion and that's what I saw..... that whole powder keg thing. The more this plays out, the more people who are willing to express their outrage. I think there were far more women who were quite pissed off and not really verbalizing their irritation. I hope this "sparked" the beginning of a new era for those of us with breast cancer dx and for the future. I may be an idealistic fool but I have to believe things can and will change.

      xoxox

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  3. Crawford GlissadevilleFebruary 9, 2012 at 2:01 AM

    The Jester insults the King with impunity. The Fool is a very powerful Tarot Card.

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    1. CG..... I hope you are getting notification if there is a follow up on your comment...... I have a dear DEAR friend who dabbles in astrology. Actually, I decided if it was good enough for Nancy Reagan to consult an astrologer when she was First Lady, it's good enough for ME. Had a lengthy conversation about The Fool this evening......... Taking another peek at your great note on a more recent post..... I got a scent of roses as I was reading my computer screen...... FYI-my entire life is represented in that card...... the back stories, the stuff I continue to bemoan... EVERYTHING..... reading me from afar?

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