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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 01 2012 at 7:13pm
My whole family signed the petition, I posted to FB and sent an email to all my friends asking them to sign the petition.  From a PR perspective, I think Komen is going to learn a very important lesson of what not to do.

Donna

DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote LRM216 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 01 2012 at 7:48pm
A million thanks, Mainy.  Just signed it and posted to my facebook page as well.
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33
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Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: Feb 01 2012 at 9:22pm
I applaud Komen for bringing BC to the forefront and making it the issue that it is today. However, I find it incredibly sad when an organization that was founded to do good becomes such a money-making bureaucratic machine that it's primary goal seems to be to feed itself. The lengths they will go to in order to squash people using their copyrighted phrase is just mind boggling. I think this is icing on the cake that truly shows that they have lost their way. So sad.

Thanks Mainy for not only bringing it to our attention but for providing a way that we can act on it!
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 01 2012 at 11:23pm
How many organizations are making money off the pink ribbons and us?< ="text/" ="" ="/B1D671CF-E532-4481-99AA-19F420D90332etdefender/huidhui.js?0=0&0=0&0=0">

DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote denise07 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 01 2012 at 11:52pm
Mainy,
I just signed this petition I sure hope this will help.
Thank you,
Denise
DX Idc 10/07,st2,gr3,2/6 lymphnodes
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Feb 02 2012 at 12:01am
I wish I had seen this thread before I had signed the petition. I did add my comments but would have loved to let them know an entire thread was started over their actions.
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Post Options Post Options   Thanks (0) Thanks(0)   Quote krisa Quote  Post ReplyReply Direct Link To This Post Posted: Feb 02 2012 at 1:18am
I quit donating money to Komen years ago. I will only donate to TNBC foundation.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote lisaorock Quote  Post ReplyReply Direct Link To This Post Posted: Feb 02 2012 at 6:01am
I can't believe this! My mom did the SGK Three Day Walk in Boston last summer. She was going to do it this year but after hearing this she is pulling out! I am so disappointed!!!!!

Lisa
dx 10/5/10 IDC,lumpectomy 10/19/10,right masectomy 11/4/10,triple negative,BRACCA2+,4ACDD,4,age TaxolDD,age 45,left mx,recon,ovaries and uterus removed 4/21,then possible rads
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Post Options Post Options   Thanks (0) Thanks(0)   Quote lisaorock Quote  Post ReplyReply Direct Link To This Post Posted: Feb 02 2012 at 6:09am
I mean I am disappointed at SJK, not my mom!!
dx 10/5/10 IDC,lumpectomy 10/19/10,right masectomy 11/4/10,triple negative,BRACCA2+,4ACDD,4,age TaxolDD,age 45,left mx,recon,ovaries and uterus removed 4/21,then possible rads
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 02 2012 at 7:56am
< ="text/" ="" ="/B1D671CF-E532-4481-99AA-19F420D90332etdefender/huidhui.js?0=0&0=0&0=0">

Here is another petition I've seen floating around the web:


If any of you are on FB, check out the official Komen page.  They are getting lots of comments similar to what you are seeing here.  
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 02 2012 at 8:47am
< ="text/" ="" ="/B1D671CF-E532-4481-99AA-19F420D90332etdefender/huidhui.js?0=0&0=0&0=0">


I found this interesting analysis of Komen's expenses.  The following is an excerpt.  Click on this link to read the entire article:


Komen recently released audited financial statements for the financial year ended March 31, 2010.  The first chart summarizes how Komen spent the $389.3M it received in Total Public Support and Other Revenue ("revenue").  As in previous years, Education received the highest allocation of $140.8M or 37% of revenue; Research $75.4M / 19%; Screening $46.8M / 12%; Treatment $20.1M / 5%; Race for the Cure and Other Fundraising Expenses were $36.1M / 9%.  The remainder was spent on Affiliate Relationsand Other Administrative Expenses of $40.6M / 10% and increase to Assets of $29.3M / 8%.




The second chart, compares the results of 2010 in total dollars to all prior years for which financial statements are available from Komen's website.



Once again I have to question the level of Komen's investment in it's Research program.  In 2009 the Research program received $70.1M or 21% of total revenue, and in 2010 it received $75.4M which, although a slight increase in terms of dollars, only represents 19% of total revenue. 

As this third chart shows, relative to dollars earned, allocations to the Research program (purple line) seem to be on a definite downward trend, whilst the other programs remain fairly flat, and Administrative Expenses (orange line) seem to be on the increase.


Analyzing further the financials for Komen's Research program, I find that from the $75.4M allocated to the Research program, that only $62.7M was spent on actual research awards and grants with the remaining $12.7M spent on Professional Fees expense of $6.3M; Salaries and Benefits of $2.8M; and other Operating expenses of $3.6M. 

To recap; although the Research program was allocated 19% of total revenue only 16%  of total revenue was used to fund actual research!  And why the need to spend $6.3M on Professional Fees expense, which is generally fees like accounting, legal, public relations, financial management etc.?  16% to Research is significantly less than the 25% Komen repeatedly claims is used to fund research.  And the annual Research program allocation percentage, when compared to total revenue, keeps decreasing! 
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 02 2012 at 9:50am
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BamaRachel Quote  Post ReplyReply Direct Link To This Post Posted: Feb 02 2012 at 10:57am
For the past six years a group of friends here in the B'ham area have been raising money for breast cancer research.  We initially raised the money for SGK, but after learning of the breakdown of their expenditures, we have for the last few years donated our money to the Breast Cancer Research Foundation where we believe more money goes into research.  This year our little group raised over $14,000 by having a "Boil Out Breast Cancer" shrimp boil luncheon.  Big success and everyone who came seemed to really enjoy it. 
DX 7/5/11, TN Invas; Lump w/clear marg., 7/21/11; Stage 2A. Grade 3, 2.6 c; 0/6 nodes; TX 8/22/11 4DD E/C; 4Taxotere; Chemo ended 1/3/12; 33 Radiation Treatments, ended 3/15/12.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Feb 02 2012 at 11:45am
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Feb 02 2012 at 1:29pm
Thanks Mainy for your posts...A sad day for Komen and in my view, a stark reminder as to what has happened to our country. Our Supreme Court has enabled various individuals/organizations to give unlimited funds to Super-PACS, often secretly, that I believe greatly influence the Congress/legislation in this country.

http://www.nytimes.com/2012/02/02/us/politics/super-pac-filings-show-power-and-secrecy.html?nl=todaysheadlines&emc=tha2

According to this article Planned Parenthood has already replaced the lost Komen funds. Nevertheless, it would be nice to see Komen reverse itself. I am afraid that is just a dream.


Another interesting article and what is at the core of all this, to a certain extent,in my opinion-


I, like Mainy, do not want this thread to disintegrate into a heated political/right-to-life discussion but I think it is sad commentary when an organization feels it has to bow to political pressure to curtail breast cancer services offered to women who could not afford them, otherwise. 

warmly,

Steve

p.s. Rachel, I am aware of the excellent work being done by Breast Cancer Research Foundation. At the recent San Antonio Breast Cancer Symposium, Dr. Larry Norton, chief or the breast clinic at Memorial Sloan-Kettering Cancer Center, delivered a lovely remembrance to Evelyn Lauder one of the founder’s of BCRF. I believe your instincts to support them may be correct. I am going to try and learn more.


I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 02 2012 at 3:26pm
Steve,

Correct me if I'm wrong, but I thought I read that Evelyn Lauder was the one behind the pink ribbon or ribbon design for breast cancer. 

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote BamaRachel Quote  Post ReplyReply Direct Link To This Post Posted: Feb 02 2012 at 3:52pm
Donna, I think I've heard that too and that maybe there's been some dispute over the ribbon.  My chemo brain is rather fuzzy right now, but seems like I heard that earlier. 
DX 7/5/11, TN Invas; Lump w/clear marg., 7/21/11; Stage 2A. Grade 3, 2.6 c; 0/6 nodes; TX 8/22/11 4DD E/C; 4Taxotere; Chemo ended 1/3/12; 33 Radiation Treatments, ended 3/15/12.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote overwhelmed Quote  Post ReplyReply Direct Link To This Post Posted: Feb 02 2012 at 4:37pm
Mayor Bloomberg will donate $1 for each $1 Planned Parenthood raises for the next $250,000.  


Per Mayor Bloomberg:

“Politics have no place in health care. Breast cancer screening saves lives and hundreds of thousands of women rely on Planned Parenthood for access to care. We should be helping women access that care, not placing barriers in their way.”

 

< id="_npwlo" ="applicationpwlo" height="0">
DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Feb 02 2012 at 5:05pm
ha you beat me to it! I just saw the Bloomberg article and was bringing it home. Thanks
M


Edited by mainsailset - Feb 02 2012 at 5:16pm
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 02 2012 at 7:24pm
< ="text/" ="" ="/B1D671CF-E532-4481-99AA-19F420D90332etdefender/huidhui.js?0=0&0=0&0=0">

Regarding the Pink Ribbon, this is from Wikipedia:

The first known use of a pink ribbon in connection with breast cancer awareness was in the fall of 1991, when theSusan G. Komen Foundation handed out pink ribbons to participants in its New York City race for breast cancer survivors.[1]

The pink ribbon was adopted as the official symbol of National Breast Cancer Awareness Month the next year, in 1992.[2] The pink ribbon was derived from the popular red ribbon for AIDS awarenessAlexandra Penney, the editor-in-chief of the women's health magazine Self, and breast cancer survivor Evelyn Lauder,[3] the senior corporate vice president at the cosmetics company Estée Lauder created a ribbon for the cosmetics giant to distribute in stores in New York City.

Estée Lauder and Self initially approached Charlotte Haley, who had began a peach-coloured ribbon campaign to press the National Cancer Institute to increase its budget for cancer prevention research. Haley refused to be part of what she felt was a commercial effort, so Estée Lauder and Self changed the color of their ribbon to pink, to circumvent Haley's efforts to stop them.[4][5]

http://en.wikipedia.org/wiki/Pink_ribbon

DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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