The National Breast Cancer Foundation a disreputable charity

kira66715

One of the LE thread posters found their "Beyond the Shock" (trademarked) video series to contain serious misinformation about LE--"It lasts 6 weeks and goes away with good nutrition", and many of us emailed them--to deadening silence. A VP emailed one woman back and asked us bc veterans to help him edit his mistakes!

Some searching on Charity Navigator shows they have a budget of 11 million dollars, supposedly delivering low cost mammograms--which since mammograms are covered by insurance or the national women's cancer screening grant for the uninsured, seems unlikely.They have assets of 9 million and pay themselves over a million/year.

They get a 4 star rating and higher rating than bc.org, yet did not respond to our concerns about their information--which they sell to nurses for education.

I posted on the LE thread, but wanted to give it it's own post as I find a charity that is making a lot of money off breast cancer patients, yet is unresponsive to contact, and actually had the audacity to ask US--the patients who contacted them and were ignored-- to edit their information, a very suspicious organization.

I have no idea what sort of oversight there is for questionable charities, but I'd warn women to be very cautious with this one, who hides under a number of different web sites.

I did read their financial reports: they spent 3 million on breast cancer awareness, and paid themselves 1 million. I'll copy the financials link.

www.nationalbreastcancer.org/a...

Douglas Feil--the VP of development who contacted only Tazzy: "learning about breast cancer"--you can view his facebook profile, from their site beyondtheshock.com/users/111 

 "Beyond the Shock" is marketed as continuing education for nurses--you subscribe to nurse.com and you can get one credit hour for watching this misinformation.

ce.nurse.com/ce650/beyond-the-...

He markets this on iTunes as "Dr" Feil

www.nationalbreastcancer.org/a...

Charity Navigator gives them a 4 star rating--scoring them higher than bc.org...

www.charitynavigator.org/index...

Look, I know I'm on a tear, but here's from a national article:

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."

Their founder, a 30 year survivor, has made a very profitable family business out of her breast cancer credentials, and spreads harmful misinformation and is unresponsive to women with breast cancer who contact her.

Yeah, I'm mad.

jezebel.com/5840564/the-breast...

fredntan

posted to my FB. I went to grocery store today. and pink crap was everywhere. think most people on FB have me on ignore by now though

kira66715

From their site:

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.

So it's an industry--she had a mastectomy 30 years ago, and her entrepreneurial skills made it into a lucrative family business. Love how they self proclaimed themselves a "National" foundation.

Thanks for posting on FB.

Kira

flash

Gee, a mast 30 years ago means she's an expert?  Way too long ago.  Not impressed by their site.  So sad she'd make it a business but hen there's another that started in this chat room that now uses BC to make money to cover herself.   Sad.

LtotheK

This breaks my heart. Komen took such a huge hit and I have a ton of friends who say "all my money to PP now!"  That's great, but we have to address breast cancer specifically.  And what is sad is, Breast Cancer Coalition, a super-cool org, just doesn't have the guns to affect real research initiatives.

So what do we do??

kira66715

Totally agree that all that money could be spent on funding legitimate research, real research that wasn't just "awareness"

L to the K, National Breast Cancer Foundation has the guns, tons of money, but CHOSE not to fund valuable research. Their decision to pad their own pockets, riding the breast cancer wave.

They pulled the inaccurate "Beyond the Shock" video clip that said LE lasts 6 weeks, but left the text up.....Thanks for helping women with breast cancer--NOT!!

Komen watch had a good page on what to hope/expect from a legitimate breast cancer charity:

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 (Substitute ANY Breast Cancer Charity...) Role in this Future?

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.

DivineMrsM

Breast Cancer Action

Please click on the above link to let your voice be known to state elected officials that we have moved beyond awareness and want a CURE.   

kira66715

Done. Thanks.

National Breast Cancer Foundation still has their misinformation up and won't respond to emails. 

Anonymous

Interesting.  Wonder if you also have the Financials of BC.org?  How much is Dr. Weiss paid for her "work" with BC.org?  What are the salaries of the 5 top paid people working with BC.org.

While we're discussing "financials" - and who gets paid what, b4 it comes back to surprise, might be interesting to know.

kira66715

Here are the financials on Charity Navigator: bc.org has revenues of 3 million. Dr. Weiss' salary was 211,000 or so.

http://www.charitynavigator.org/index.cfm?bay=search.summary&orgid=9417

As I have lymphedema, I turn to the National Lymphedema Network, and discovered their revenues are 300,000 or so.

It just blows me away that this National Breast Cancer Foundation has 11 million in revenue. And don't appear to do anything, except subsidize mammograms and self bad information to nurses.

http://www.charitynavigator.org/index.cfm?bay=search.summary&orgid=8776

All these charities have to post their financials, sometimes you have to search a bit.

kira66715

Posted this in the LE forum, but wanted to update this thread:

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

www.marieclaire.com/world-repo...

If I do the math, they gave out 2 million in grants, and likely paid their family a similar amount....

DivineMrsM

kira, the information is unsettling.  Thanks for your investigative work and letting us know more of the facts.  What can we do as individuals to make others more aware of this squandering of funds?

Anonymous

This is very interesting, thanks for all the info.