I would suggest that all of us not only sign the petition but put it on our FB page and perhaps take the links to our doctors' offices and ask that they sign the petition as well.
Thank you for sharing this. One of my colleagues' mother died of breast cancer a week ago. I was more angry than sad because she lived only one year after her diagnosis of stage IV breast cancer. The medical field needs to move faster to cure this disease. I travel 6-7 hours to see a 74-year-old oncologist and used a chemo regime that has been used for 20 or 30 years. I chose to do that because the long-term survival rate of his patients 10 or 20 years ago is still better than what the standard of care can produce today. That is really sad. If the younger generations of oncologists are no better than a 74-year-old doctor, what kind of future do we and our children have? This got to change! More research is needed to improve the standard of care!
Edited by positive_attitude - Feb 03 2015 at 9:16am
DX IDC TNBC May, 2014, 4.7cm, 5.8cm on Taxol. Taxol 4 weeks, AC 6. double mastectomy OCT 2014. 1.8cm residual in breast and 3mm a lymph node. BRCA-. 11/17 Abraxane,5FU.11/20, rads, 1/19 FUMEPx2
I stopped donating to the Koman Foundation in June 2013 when the news came out that the CEO at the time (Nancy Brinker, Susan KOman's sister) was set to receive a total annual compensation package of $684,000. While I admire the Foundation that Nancy Brinker built and all the positive work that Koman has done to help de-stigmatize breast cancer, it seems to me that Ms Brinker lost her moral compass somewhere along the way.
The success rate for getting NCI (National Cancer Institute) grants is between 10%-20%. The most experienced investigators have a success rate approaching 30%. That means 70%-90% of people doing cancer research are not funded. "https://gsspubssl.nci.nih.gov/blog/articles?funding_patterns/2013" It is crucial that non-profits with hundreds of millions of dollars participate to cover these costs. Awareness and early detection is a small part of the puzzle. And, may be doing more harm that good.
Bill Gates recently answered this question: "Do you have thoughts on (medical) research back here in the USA? Governmental funding is reaching dangerously low levels, and many bright and talented clinicians and scientists aren't even applying for federal grants knowing they have little chance of being funded. What can we do about this?
His answer:
"Research is very underfunded compared to the ideal. Society captures so much benefit from innovation that inventors don't so there is not enough risk taking. Government (and Foundation) funding of research helps but it still should be more. The United States funds a lot more than any other country even relative to its success. It should do more medical and energy and educational and other research"
His foundation focuses health in 3rd world countries and has done amazing work, with millions of lives saved because of him. Can Komen say that? How many millions of lives do you think they have saved, comparatively?
We need a three-pronged attack: the government, the drug companies, and the non-profits. Right now, we have one (drug companies) and 1/4 (government funding). We barely have non-profits involved, considering the 5% estimated number linked in my petition. Find the key to why cancer metastasizes and you have found a lot.
Please keep passing this petition along and sharing it. You can share it twice or three times - not everybody sees everything the first time! Tell any of your friends who have supported you in your cancer struggle, or have been a caregiver in cancer, or who have a heart, to sign this petition and convince the big non-profits, most especially Komen, that all we want is what we deserve - 50% to go towards funding research. It is time.
And it occurs to me again that with the Sequester NIH research was cut back yet again. We also watched this Fall when the Ebola scare came politically to town and then rather than create new funding for Ebola the NIH was forced to move monies over from other research, including cancer, to cover the uptick in Ebola research. In a perfect world shouldn't there be a lock on existing research that its funding can't be robbed (read stopped in its tracks) to promote a different research?
I think this is a great opportunity for all of us to help raise some money for TNBC Research. 100% is going towards research! We need to support the TNBC Foundation and all they do for us. It's not too late to register.
ArleneB wrote:
Yes...you read that correctly! We are excited to announce that 100% of every donation we receive in support of TNBC Day events (including online fundraisers) will be designated exclusively for TNBC specific research efforts!
WE NEED YOUR HELP! TNBC Day is right around the corner. We are asking all of our friends and supporters to take just 5 minutes and set up a quick and easy, online fundraising page to send out to family and friends by email or social media. There are NO FUNDRAISING REQUIREMENTS OR FEES. If you raise $10, that's ten more dollars we can dedicate to research projects aimed at finding successful treatments for triple negative breast cancers.
TNBC Day has raised almost $500,000 since our inaugural year in 2013. Those funds have enabled us to offer more grants than ever before to promising research initiatives. Click HERE to read about some of TNBC Foundation's recent grant awards.
Click the registration link below to set up your online fundraising page today!
Thank you for the info. I started a fundraising page today after reading your post and just today I've raised $455!! I can't believe it! It was really easy. Here's my link:
I am so happy to know the TNBC Foundation is going to use 100% of the donated money from TNBC Day for research! We should all step back and thank them for all they do for us and research. I just wish more charities would do the same. Maybe Komen needs to learn a lesson from the TNBC Foundation? Thank you again for using the funds for TNBC Research!
Well it looks like Komen is once again starting with their misleading ads proclaiming to finding a cure.
Some things never change for Komen, but only 11% for Research? Are you kidding me?
2014 Total net revenue $294,121,018 wow, that is a lot of money. Now Research Awards and Grants- $32,911,550 Not a huge percentage for research, "For The Cure" now is it? They SAY they spent $43,396,973 on research, but that includes things like "RACE SERIES PROMOTION", MARKETING AND COMMUNICATIONS, SALAREIS AND BENEFITS, ($6,130,399), CONFERENCES, CONVENTIONS AND MEETINGS, PRINTING AND PUBLICATIONS,TRAVEL...and on and on. " FOR THE CURE"? TRY SPENDING MORE TO FIND THE CURE AND LESS ON THE BUSINESS OF CANCER!
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
absolutely agree Donna. It's ridiculous. A good percentage should go to research. Whats the point of souvenirs in pink ribbons and races when the point is to eradicate Cancer and to Make living with it easier. These Charities are showing a corrupt side and it's not Cool.
DX Jan06 `14. IDC TN 2.0cm. Grade 2. Neoadjuvant: Taxolx12,FECx4. Post Surgery LX- Tiny Micromets found in 4/17 removed LN- 6mm residual. Wide Radiation 25x. Carboplatin AUC 6 x 2, AUC 5 x 2
I find myself swayed by a posting on facebook from a wise woman who pointed out that much of Komen's funding goes towards financially supporting members, helping pay for expenses, scans, treatment, BRCA testing.
Komen really misses the boat here by not regrouping their PR and pointing to the variety of ways their funds help the bc family. That said, they can do better in how they prioritize and how they manage the monies they bring in. 11% is a sign of failure not success.
Beating Cancer: The Real Life Battle for Patients and Their Loved Ones
Only medical research can beat cancer, and the tragedy of cancer deaths cannot be softened.
. . . ."The cancer marketing machines use this spin on feel-good cancer as well. Images of women linking arms as they “beat cancer,” inspires the raising of millions of dollars, some for the good of research and helping people, and too much to line the corporate pockets of disease greed. Out of every $100 raised by the NFL during its breast cancer awareness campaign, for instance, only $11.25 went to the American Cancer Society. . . .
. . . . .In the same way, people afflicted with cancer are also human beings. They are not faces in a marketing campaign, a person being given a gift or a lesson to be learned. Cancer is no gift. It is a scourge taking more lives and loved ones than diabetes, strokes and Alzheimer’s. (Only heart disease kills more people than cancer every year). The only hope of beating cancer is medical research, and thankfully breakthroughs have allowed more and more cancer patients to live or live longer."
The truth is, only 12.06% was spent on research awards and grants.
It gets worse.
Affiliate payments for the year ending March 31, 2015 totaled $20,910,092. This means that the local affiliates funded 69.29% of the research awards and grants. Total awards and grants were $30,174,566 (See Figure 2), meaning that the national office funded $9,264,474 in pure research awards and grants.
How much public support and revenue did they declare? $250,276,362 (See Figure 1). (Although, their tax form 990 declares gross receipts to be $279,485,608, but let’s stick with the consolidated statements to be consistent.)
If we subtract out the affiliate payments from the public support and revenue, the balance is $229,366,270. This means the percentage that Komen national office actually spends on pure research grants and awards is 4.03%.
I’m not an accountant and I’m not a statistician. However, I can look at these numbers for a single year and see that the majority of Komen’s national funds are not going “for the cure.” What does it take to change? Last weekend, my smoke detector batteries died and I had to deal with that screeching noise those alarms put out until the batteries are replaced. However, over the next few days, the alarm continued to screech. Turns out that it was time to replace the entire unit. It wasn’t good enough to keep putting new batteries in it … a completely new model had to be put into place.
When Komen began, the model of public awareness and education was vastly needed. However, 30 years later, it’s time to replace that model. It’s no longer acceptable to say, “Early detection saves lives” because if that were true, all early stage diagnoses would result in a 100% cure with no risk of recurrence. There are too many early stage patients having metastatic recurrences two and three decades after their primary diagnosis. More research must be given into the biology of tumors to understand how to stop metastasis long before it occurs.
Research takes money. Komen, please open your corporate wallets and designate more money into the area where differences can truly be made. No more running and racing for a cure. Let’s have research for a cure.
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
Society seems to find a way to bank on anything including the misfortune of others.
This whole business is amounting to greed and is truly criminal.
Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
I take advantage of every opportunity to educate people about PinkOctober. Some think I am exaggerating or just out right lying about the PINK campaign. I figure if it get the attention of a few, maybe the word will spread.
I Love all of my triple negative breast cancer sisters. Waiting and praying for a CURE.
God Bless,
Lillie
Dx 6/06 age 65,IDC-TNBC Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED
I just viewed this great youtube video. The charts and graphs are so powerful telling us what we already know - Komen is an amazing marketing company. Close to 50% is spent on "marketing" and only 11% actually ends up funding research.
You cannot post new topics in this forum You cannot reply to topics in this forum You cannot delete your posts in this forum You cannot edit your posts in this forum You cannot create polls in this forum You cannot vote in polls in this forum