Where is the outrage?

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited March 2015

    I'm with you there, Leggo. What a shame to lose him so young. I am SO sorry. (Hug)

  • leggo
    leggo Member Posts: 3,293
    edited March 2015

    You're very kind. Thank you.

  • Maasai123
    Maasai123 Member Posts: 4
    edited March 2015

    I'm in San Diego and would love to brainstorm ways to discover and publish what sgk does w money.

    Does anyone know an investigative journalist who might be interested in working w us?




  • leggo
    leggo Member Posts: 3,293
    edited March 2015

    Maasai, their financial records and how the funds are distributed are public. You can Google them. Brace yourself for the CEO'S salary.

  • dlb823
    dlb823 Member Posts: 9,430
    edited March 2015

    While excessive and disappointing, the shameful thing IMO isn't salaries. It's the fact that Komen misleads the public with their now-trademarked slogan, "For The Cure," when such a small percentage (only 18%, if I remember correctly) of their budget goes to research. The majority of it goes into more promotion of Komen and their awareness stuff, including probably outrageous legal fees in the past to block anyone else from even using the word "cure." That's what I find so revolting, as well as their affiliations (including major fundraising programs) with corporations whose products actually are implicated in increased the risk of cancer, and their obvious disassociation or denial about metastatic breast cancer. Sadly, we've proven that breast cancer can't be cured with awareness.

    I think many people have already gotten the message that SGK has serious flaws, and IMO simply focusing on bad rapping them publicly may not help as much as it turns people off about the benefit of donating anywhere. I don't have the answers, but we need to find a positive forward message -- whether that's putting whatever energy and clout we have behind StandUp2Cancer or Susan Love's Army of Women, both of which focus on research, or something else. JMO. Deanna

  • JohnSmith
    JohnSmith Member Posts: 651
    edited March 2015

    As mentioned above by leggo, charities are required by law to disclose their financials.
    Charity Navigator is an independent American nonprofit that evaluates charities in the United States. Anyone can register and log-in. I did and just noticed Komen's March 2014 Tax return (IRS Forms 990) is now available. It's 224 pages long. At page 207, you can see the compensation for the officers, directors, key employees, etc. Elsewhere, there may be data disclosing where the donations go. I didn't look.. don't have time or knowledge of reading financials. I honestly don't know enough about this topic. I just wanted to provide the link so others can do their own research.

  • gypsyjo
    gypsyjo Member Posts: 304
    edited March 2015

    They post how much goes to program on Charity Navigator. Komen's program includes awareness so it is lumped together with research. Even then they rank below others. At the bottom they show other charities addressing same issues and almost all the others are higher rated.

  • leggo
    leggo Member Posts: 3,293
    edited November 2015

    Thanks John, for providing the links. Truth be told I can't stomach reading ANY cancer charity's financials any more. I wonder how they sleep at night?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2015

    I would be willing to do the Barbie thing. What a great idea. And to meet with a bunch of you all, too.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2015

    It's bad enough that you have an incurable disease. To be shamed into thinking you contributed to your predicament is cruel and heartless.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2015

    I get especially outraged when I hear of a young mother with little kids dying of this disease! It is so blatant and brazen, the injustice of it all!! To get the most funding and hardly no improvement in prognosis of MBC. Yes, the biggest slice of fundrasing is by BC advocates, yet the death toll remains the same. It makes no sense.

  • leggo
    leggo Member Posts: 3,293
    edited March 2015

    Sickening isn't it? It makes no sense to someone stricken with it and the doctors who have to treat it, but it makes perfect sense to those who have a financial interest. Sad times. 

    Gotta tell you what happened a couple weeks ago. I went for my regular appointment with my neurologist. His nurse usually does some  test with nodes and wires ( can't remember the name). She was telling me that they use this machine exclusively for cancer patients for the neuropathy caused by treatments. The machine is ancient so she approached both the Canadian Cancer Assoc. and the Breast Cancer Foundation for funds for a newer machine. They both turned her down. She was so angry. They held their own fundraiser. Need all that money "to raise awareness" and supply stupid pink back-packs, or "so you have cancer" pamphlets. Ugh.

  • leggo
    leggo Member Posts: 3,293
    edited March 2015

    And lest I forget, those moronic "live well" commercials I mentioned earlier. Air time costs what? 200 grand in primetime? And unless she donated it, the rights to the song?  That they have plenty of money for. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2015

    I sympathize with everyone who has some form of metastatic cancer. That said, does prostate cancer even have the backing of a giant like Komen? No, they don't! Yet I can bet that the prognoses of those with MPC are better than those with MBC!

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited April 2015
  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2015

    Copied and pasted from email (without links because I did not get that choice):

    METAvivor Launches Sea to Sea for MBC
    METAvivor is certainly keeping everyone on their toes these days with so much activity going on! At the top of our list is the first Sea to Sea for MBC researcher visit! We are finally off and rolling! We began Monday with an exciting presentation at the National Cancer Institute, where Kelly Lange and team visited with Dr. Balamurugan Kuppusamy to learn more about his research. Tuesday we will be with Gold Plus sponsor AstraZeneca, and then we're headed toward Pennsylvania. You can follow our progress on Facebook (METAvivor Sea to Sea for MBC) and on Twitter (@C2C4MBC).
    And if that weren't enough, I'm thrilled to share with you the second in our video series highlighting the reality of life with MBC. Let us know what you think!
    In the midst of all the excitement, we continue to lose lives. Monday's C2C4MBC research visit was dedicated to Seporah Raizer. Seporah was diagnosed at the age of 30 with inflammatory breast cancer and died Sunday, at just 35. Our thoughts and prayers are with the Raizer family, Seporah's friends and loved ones, and all of us who benefited from her grace and wisdom through her HuffPost blog, her tweets and her shining light. Please join me by taking a moment to honor her memory, may it forever be a blessing to all who loved her.

    Sincerely,
    METAvivor Research and Supprt



  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited April 2015
    Thanks, Brenda.
  • dlb823
    dlb823 Member Posts: 9,430
    edited April 2015
  • Nel138281
    Nel138281 Member Posts: 2,124
    edited April 2015

    dlb823  Thank you for sharing the blog by Beth.  I did not know how to post here!  Very powerful

    The Metastatic Breast Cancer Conference held by LBBC was this past weekend in Philly.  They have initiated a new program called "Hear My Voice"    I was fortunate enough to be part of the first "training class" with a group of amazing women.  Sunday AM we staged a die-in, like a sit in, to represent the 108 women who die every day from MBC. ,  The goal for the HMV volunteers is to raise awareness about MBC.  We need to  let folks know we are here!   With awareness hopefully will come increased funding for research.    

    I believe the LBBC site www.lbbc.org there are  photos and a video of the die in as well as videos of some of the conference speakers.     

     


     

  • dlb823
    dlb823 Member Posts: 9,430
    edited April 2015

    Thanks for the inside info, Nel! Kudos to Beth and whoever else came up with this idea -- to focus on the very powerful 108 stat. Hear My Voice sounds very exciting. Thanks for the link!


  • MusicLover
    MusicLover Member Posts: 4,225
    edited April 2015

    Thank you Deanna for posting that article! This is the closest thing I have seen to the idea that I had with the mannequins.  We need this photo on billboards on every major highway in our country. 

    image

    With a caption of...108 women & men die of breast cancer in the united states every day, WE NEED A CURE!!!

    I didn't watch the Night Shift last night but they included the topic of breast cancer...so much coverage, so many deaths but still no cure.

    (I grew up with no grandmothers and only one grandfather until I was in about 6th grade when he past away, I am outraged that more than likely I will not be a part of my future grandchildren's lives.  I felt so left out when I saw the relationship that my friends had with their grandparents. This just sucks. I partially blame myself but it still hurts immensely.)

     

  • MusicLover
    MusicLover Member Posts: 4,225
    edited April 2015
  • MusicLover
    MusicLover Member Posts: 4,225
    edited April 2015

    I like this thread, any more comments..

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2015

    I am not as upset for me as I am for the young women who have MBC, especially the ones who have little kids. Why does this have to happen when the biggest slice of the fundraising pie goes to breast cancer?!? Where does the money go?

    MusicLover: Why did you say that you partially blame yourself? I hope it's not because you think you have somehow contributed to your disease? You need to get out of that mode! You are not to blame for anything, partially or otherwise.

  • MusicLover
    MusicLover Member Posts: 4,225
    edited April 2015

    Adnerb, I blame myself a little for the stage IV but it's a long story.  I wish we all knew the cause, then we wouldn't be here maybe? Thank you for your kind words. 

  • leggo
    leggo Member Posts: 3,293
    edited April 2015

    I'd like to address an earlier post on this thread.... The one regarding prostate cancer vs. breast cancer advocacy and better outcomes for prostate without all the charitable organizations, petitions, etc. That's just one good example. I've been an activist much of my life. If there's one thing I've learned it's that there's a fine line between advocacy and making a mockery of a cause. It pains to say it, but somewhere down the line breast cancer has turned into the latter. There's a lot of damage that's going to have to be undone (if it even can), before it gets back to being taken for the serious disease it is. Too much exposure can be just as bad as not enough. At some point, nobody wants to hear about it anymore. Breast cancer gets more funding, more exposure, more drugs than any other disease on the planet and everybody knows it. Time to take a step back and re-evaluate the priorities. JMO (with a little experience thrown in).

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited April 2015

    leggo, I do agree that breast cancer has become more of a cliche than anything else and I think a lot of people see it as 'cancer lite.' (You, know, the Pink One) The number of people who are shocked at the idea that this could be life threatening is really eye-opening. Everyone expects that it will be cured and that I just need to stay strong and muscle through the experience so that I can come out transformed into a better person. Nobody's implied any such thing to other friends/relations with different cancers.

  • leggo
    leggo Member Posts: 3,293
    edited April 2015

    Very good point Hopeful. But maybe, just maybe, they think of it as cancer-lite BECAUSE of all of it. I think there are a lot of people out there however, for whom cancer, any cancer, is their worst fear (like me). BC though, gets all the attention to the point of overkill, which kind of numbs the seriousness of it. I don't think people are as naive about BC as we think they are, at least I believe that. Cancer, period, is deadly.

  • leggo
    leggo Member Posts: 3,293
    edited April 2015

    And I do want to tell you MusicLover, you're not alone in feeling that way. I'm 100% sure I know what caused my bc and I have some serious regrets that gnaw on me. I do try though, to look forward, not back so that the disease doesn't get the best of me. I do what I have to do to get those regrets out of my mind the minute they surface.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited April 2015

    Leggo, I agree absolutely about the overkill (plus the pinkness) numbing people to the seriousness of it, or at least, misleading them. That's part of the point I was trying, unsuccessfully, to make. Thanks for helping to clarify that.

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