The National Breast Cancer Foundation a disreputable charity
Comments
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The National Breast Cancer Foundation has
1) put up 20 reviews on charity navigator, previously there were 3--2 of which were negative--although they won't respond to our emails, they are trying to put a positive spin on what they do--which is???
2) Are giving money to both fund mammograms and breast health navigators, including Lillie Shockney of Johns Hopkins:
Lillie who recently wrote to a woman on this forum:
For those having sentinel node biopsy only, it is a rarity here to determine lymphedema and the need for precautions is far far less than for someone who had an ax dissection. Actually to date we have only had 2 patients develop lymphedema that I am aware of among the thousands who have had sentinel node biopsy here. many thousands.
She's as big of a source of misinformation on LE as the After the Shock. But, she's an "expert" on bc.org and funded by this "charity": shes a LE denier, and a source of delayed diagnosis and treatment at Hopkins and beyond.
An internet search turned up this comment, from a Catholic chat room in 2008:
Re: The National Breast Cancer Foundation
Just on a side note on this group. A few years ago I tried to contact this group for help with a free mammogram for my mother who cannot afford one. Her sister died of breast cancer a few years ago and this disease tends to run a mock in my family. I had been an avid donor for years under my aunts name, but when I got the run around with this group about getting the free mammogram I have made it my mission to let people know that they are not what they seem to be.
Personally, I am sickened that a woman has made a lucrative business out of having a mastectomy 30 years ago, collects huge amounts of money and doesn't appear to distribute that money in a meaningful way.
And doesn't respond to emails.
I've beat this to death, but it's appalling, IMO.
Kira
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Here is something ironic, one of their marketing partners is godaddy.com, I was looking at buying domains, and a donation goes to, you guessed it, NBCF. The sad thing is except for some cheesy stock photos their web design is actually better than some more legit charities.
Here is the problem, they are a crummy charity, but not a scam charity. They are actually kind of clever at offering just enough value to get by.
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Cookie, nailed it in one
A little more googling and Marie Claire wrote about them in an article on breast cancer charity scams:
For the past six years, Charity Navigator has conferred its highest four-star rating on the National Breast Cancer Foundation, based in Frisco, Texas, a suburb of Dallas. The NBCF is something of an institution in the area, each year doling out 50 or so grants of upwards of $40,000 apiece to clinics and hospitals across the country to subsidize mammograms for the uninsured. (All told, the NBCF claims to have paid for 130,000 mammograms.) The group was founded two decades ago by breast cancer survivor Janelle Hail, a charismatic Paula Deen look-alike. Despite its size - it garnered $10 million in donations last year - and blue-chip partnerships with the likes of Dannon and Fujifilm, the NBCF could be called a family business. Buried in the footnotes of its latest tax return: A significant wing of the Hail family is employed by the NBCF. In 2009, Janelle Hail took home a $172,000 salary, plus another $57,000 in "other compensation." Her son Kevin Hail, NBCF's chief operations officer, makes $130,000, plus another $55,000 in other compensation. (Both have enjoyed raises of upwards of $10,000 per year since 2005.) NBCF also employs Hail's husband, Neal, as "senior consultant" and son Brent, who is the vice president of operations. But because the IRS requires that charities only disclose the salaries of its board members, key employees, and anyone else earning more than $100,000, Neal and Brent don't qualify, and Hail won't say how much she pays them, despite Marie Claire's repeated requests.
Read more: Pink Ribbon Business - Breast Cancer Charity Scams - Marie Claire
http://www.marieclaire.com/world-reports/news/breast-cancer-business-scams-3
If I do the math, they gave out 2 million in grants, and likely paid their family a similar amount....
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The NBCF wrote back our mods that one woman is allowed to raise their concerns with them.
Insulting?
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Hey, maybe we can recruit a junkyard dog of an investigative journalist to raise our concerns?
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They're all tied up at the moment. Maybe after the election?
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Just an idea for a journalistic writer: Rebecca Skloot, an incredibly brilliant, brave, driven, and intelligent women who wrote The Immortal Life of Henrietta Lacks, about the issues of informed consent, cell line ownership, examining the question of the racial divide and what is fairness in health care and biotechnology.
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I've been keeping a medical sociologist in the loop, and it's on her list and radar. I did talk to a reporter, but never saw anything in print.
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Actually I am not sure there is a whole lot left to investigate...it kind of is what it is. What we need is as many bloggers to write about it as possible, so that some of the doubts show up when people google it.
I saw a shop this weekend that had a huge poster for them in the window and it kind of made me sick.
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There is a new NYS law about pink ribbon disclosure. Perhaps they will get nabbed by that. But the problem is really the lack of quality to their work, and that is so hard to tag on awareness causes.
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You know, breast cancer.org had us put up a thread to solicit our concerns: "Transparency" and then took it down, so as not to offend one of their experts.
And, they don't seem to see that the response is insulting and they wrote me that Doug seems so sincere!!!
When I get back in touch with Gayle Stulik, we'll work on a blog.
Cookie, you're right, the investigation is complete, now we need to raise awareness that this is a lucrative family business masquerading as a breast cancer advocacy group. Obscenely lucrative.
And to be blown off, ignored, treated as stupid, condescended to--we had breast cancer, it didn't make us dumb!--really adds insult here.
The NBCF learned so much about LE by publishing inaccurate information and having these hordes of swollen advocates overwhelm their email system (likely they got about 10 emails).
They have a snazzy website, but it hides a cesspool of soliciting funds under false pretenses.
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Cookiegirl, thanks for telling us about NYS's new law, which I've just been reading up on. It's positively disgusting that anyone would solicit money for their own benefit under the guise of bc research. Kudos to your AG for getting involved! I wish every state was as vigilant!
http://www.jdsupra.com/legalnews/cause-related-marketing-in-the-crosshair-63809/
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Thank you for the link and so great that the NY AG is holding these "charities" up for scrutiny.
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