The National Breast Cancer Foundation a disreputable charity

Nonprofits have to report financial information to the IRS, but it's easy to fudge the numbers. Money used to hire telemarketers can be described as funds used for education if the words "Don't forget to get a mammogram!" are stamped on the bottom of the charity's stationary. The value of gifts may be inflated to make it seem like the charity is bigger, and distort the fact that most of the money isn't going to breast cancer research. Even some respected groups, like the Texas charity the National Breast Cancer Foundation, are involved in potentially shady practices, like hiring a slew of family members and giving them six-figure salaries for filling vague roles like "senior consultant."

http://jezebel.com/5840564/the-breast-cancer-charity-scam

Thanks, this really got to me, because they created a for profit educational video "Beyond the Shock" which said LE lasts 6 weeks and goes away with nutrition and then would NOT respond to emails, except finally to Tazzy where their VP whined about how hard it was to edit a video !!!!, and could Tazzy help find experts and edit it for free. WTF!!!!

Audacity and harmful misinformation while making themselves rich off the breast cancer survivor angle.

From their site, about their mission: "Janelle's gentle heart and strong entrepreneurial skill set places our organization on the cutting edge of our industry as together the team at NBCF works to carry out our mission: to give help for today and hope for tomorrow"

It's an "industry"??????  Sigh, guess it is....

I read nonprofit financials as my daughter works for one, and see funding for good causes with real programs falling, and then I see this: a 30 year survivor has made her self rich and her family and her "educational" products could harm us.

Frustrated me horribly, thanks for understanding.

Cinnamon--they pulled the video in question--the one that shows sentinel node biopsy at the middle of the sternum and says that LE lasts 6-12 weeks.

They did not respond to any of our emails, except Tazzy's and they asked US to edit their text. It's in the Beyond the Shock thread.

We did edit it, and have not heard anything.

If Nitocris hadn't found the video, they would have gone on selling it to nurses for credit and having it on their site, where it has been for months, with apparently no complaints--the guy who responded to Tazzy whined about how many complaints he got, and his suspicions about "the group" who emailed him, and how hard it was to pull the video and would we, as a volunteer effort, rewrite their text....

They take in 11 million, they could pay someone to learn the facts and edit their video. Now that mammograms are covered by the affordable care act and the federal women's cancer screening program, they have to find a new product, and this "educational" video was their latest venture.

I have searched and searched their site, and it asks you to donate all over the place, or do a fundraiser for them, but beside the mammograms, I couldn't find a thing they actually did for women with breast cancer.

11 million dollars would buy a lot of LE therapy and garments. Too bad they use it for their familie member's salaries.

I'll bump the Beyond the Shock thread, and you can see where they, and it was SO hard, pulled the video in question.

They have to get that text down!

Here's a page from Komen Watch:http://komenwatch.org/

What Could the Future of Breast Cancer Advocacy Look Like?

Organizations focusing on breast cancer, other cancers, and public health work together to form reasonable partnerships, leverage available resources, and reduce duplication of services.

Organizations use evidence-based information along with the highest professional and ethical standards to develop programs and increase their sustainability and capacity.

Organizations systematically and continuously evaluate their programs for efficacy, efficiency, and relevance.

Organizations are clear and transparent about whose interests they represent.

Any organization working toward the eradication of cancer does not (directly or indirectly) endorse, partner with, or accept donations from any entity that contributes to the production or distribution of known or suspected carcinogens.

Any organization working toward the eradication of cancer does not (directly or indirectly) accept donations (monetary or in-kind) from any entity that profits from the diagnosis or treatment of cancer.

Research into cancer causation, prevention, detection, treatment, and aftercare is coordinated and, at times, collaborative to foster the greatest impact. Organizations that fund research work within this structure, with clear, evidence-based criteria for funding decisions.

What is Komen's Role in this Future? (And National Breast Cancer Foundation, and any breast cancer charity.)

Remember that Susan G. Komen for the Cure is a nonprofit organization, not a nonprofit corporation as Nancy Brinker refers to it. Act according to sound ethical principles befitting of a nonprofit.

Cease partnerships with corporate sponsors who engage in "pinkwashing."

Stop strong-arming other organizations over the phrase "for the cure." Trademark or not, Komen does not own this common language. Support your sister organizations.

Act in accordance with the mission of being "for the cure" and make research the top funding priority.

Stop producing messaging and education programs that promote simplistic early detection and lifestyle prevention measures. Early detection is a misnomer for many cancers, and it is no guarantee of a cure.

Partner with other breast cancer organizations to produce and disseminate evidence-based breast cancer awareness and education resources. Doing so will result in costs savings and economic synergies.

Too many precious resources are being wasted on holding grandscale fundraising events. Consider the power of social media and other original ideas in your fundraising efforts.

Prioritize funding and advocate for real prevention by commissioning studies on environmental factors, and by lobbying congress for legislation to stop corporate polluting and the manufacturing and marketing of known carcinogens.

Fund research studies that encompass 10-year, 20-year, 30-year periods to gain a better understanding of survival and mortality statistics for ALL stages of disease. Scientists know that five-year survival statistics are inaccurate representations of breast cancer survivorship.

Recognize the needs of women living with metastatic breast cancer; prioritize research funding in this area.

Expand your vision to include other women's cancers, particularly those that are known or suspected to be associated with the breast cancer genes (e.g. ovarian and colon cancers), those that can result from breast cancer treatments (e.g., uterine cancer, leukemia, and lymphomas), and those with similar causation.

There is a sociologist, Gayle Stulik, who has a blog and book: Pink Ribbon Blues

Her recent blog is about the false narrative of the pink ribbon and awareness: She cites Komen, but National Breast Cancer Foundation's primary, 11 million dollar/year mission is to get mammograms done:

http://pinkribbonblues.org/2012/10/the-false-narratives-of-pink-ribbon-month-redux/

Komen’s chief scientific advisor, Eric Winer of the Dana-Farber Cancer Institute, was fully aware of the problem. He told me that “As painful as it is to admit, we have oversold mammography to the American public.” That was more than two years ago.

Here's the longer version:

"What's key to surviving breast cancer? YOU. Get screened now," the ad says. The unmistakeable takeaway? It's your fault if you die of cancer. The blurb below the big arrow explains why. "Early detection saves lives. The 5-year survival rate for breast cancer when caught early is 98%. When it's not? 23%.

If only it were that simple. As I've written previously here, the notion that breast cancer is a uniformly progressive disease that starts small and only grows and spreads if you don't stop it in time is flat out wrong. I call it breast cancer's false narrative, and it's a fairy tale that Komen has relentlessly perpetuated.

It was a mistake that most everyone made in the early days. When mammography was new and breast cancer had not yet become a discussion for the dinner table, it really did seem like all it would take to stop breast cancer was awareness and vigilant screening. The thing about the false narrative is that it makes intuitive sense-a tumor starts as one rogue cell that grows out of control, eventually becoming a palpable tumor that gets bigger and bigger until it escapes its local environment and becomes metastatic, the deadly trait that's necessary to kill you. And this story has a grain of truth to it-it's just that it's far more complicated than that.

Years of research have led scientists to discover that breast tumors are not all alike. Some are fast moving and aggressive, others are never fated to metastasize. The problem is that right now we don't have a surefire way to predict in advance whether a cancer will spread or how aggressive it might become. (Scientists are working on the problem though.)

Some breast cancers will never become invasive and don't need treatment. These are the ones most apt to be found on a screening mammogram, and they're the ones that make people such devoted advocates of mammography. H. Gilbert Welch of the Dartmouth Institute for Health Policy and Clinical Practice, calls this the overdiagnosis paradox. Overdiagnosis is what happens when a mammogram finds an indolent cancer. A healthy person whose life was never threatened by breast cancer is suddenly turned into a cancer survivor. She thinks the mammogram saved her life, and so she becomes an advocate of the test.

Some cancers behave just the opposite of these slow-growing, indolent ones. Researchers now know that some cancers are extremely aggressive from the start. There's simply no such thing as "early" detection for these cancers. By the time they're detectable by any of our existing methods, they've already metastasized. These are the really awful, most deadly cancers, and screening mammograms*** will not stop them.

Then there are cancers that fall somewhere in between the two extremes. These are the ones most likely to be helped by screening mammography, and they're the lives that mammography saves. How many? For women age 50 to 70, routine screening mammography decreases mortality by 15 to 20% (numbers are lower for younger women). One thousand women in their 50′s have to be screened for 10 years for a single life to be saved.

So let's recap. Getting "screened now," as the Komen ad instructs can lead to three possible outcomes. One, it finds a cancer than never needed finding. You go from being a healthy person to a cancer survivor, and if you got the mammogram because of Komen's prodding, you probably become a Komen supporter. Perhaps a staunch one, because hey-they saved your life and now you have a happy story to share with other supporters.

Another possibility is that the mammogram finds a cancer that's the really bad kind, but you die anyway. You probably don't die later than you would have without the mammogram, but it might look that way because of a problem called "lead time bias."

The third possibility is that you find a cancer that's amenable to treatment and instead of dying like you would without treatment, your life is saved. Here again, you're grateful to Komen, and in this case, your life truly was saved.

Right now, breast cancer screening sucks. It's not very effective, and if you measure it solely based on the number of lives saved versus healthy people unnecessarily subjected to cancer treatments, it seems to cause more harm than good. For every life saved, about 10 more lives are unnecessarily turned upside down by a cancer diagnosis that will only harm them. In a study published online in November, Danish researchers concluded that, "Avoiding getting screening mammograms reduces the risk of becoming a breast cancer patient by one-third."

But it's not quite that simple. Some people really are helped by mammography screening, and if you're the one helped, it's hard to discount that one life. Right now mammography is the best tool we have. Welch, who has spent more time than probably anyone else in America studying this issue, has deemed the decision about whether or not to get breast cancer screening a "close call."

Reasonable women can decide that for them, the potential benefits outweigh the risks. Other reasonable women will decide that for them, the risks outweigh the potential benefits.

Komen isn't wrong to encourage women to consider mammography. But they're dead wrong to imply that "the key to surviving breast cancer" is "you" and the difference between a 98% survival rate and a 23% one is vigilance on the part of the victim. This message flies in the face of basic cancer biology.

"Janelle", their founder, states she's an entrepreneur and has positioned them to be a leader in this industry.

Didn't know breast cancer was an industry....She had a mastectomy 30 years ago and leveraged it into a lucrative family business.

And Hanes knows that we all hate breast cancer, so if buying their product helps "defeat" breast cancer, you feel good about their product.

They get good ratings on the national sites, it's when you deal with them--like with "Beyond the Shock"--and dig deeper into their finances that you discover they don't really do anything to help women with breast cancer, just subsidize mammograms and spread bad information--for profit.

There is a National Breast Cancer Coalition which is very different--speaks in front of Congress and pushes advocacy. 

The national person is a medical sociologist, and she's hoping to investigate it thoroughly. I'm hoping to help her.