Beyond the Shock: Another source of misinformation

Tazzy

Second that !

kira66715

I sent the letter to the medical sociologist who is following this, and she wrote back: how insulting!

Tazzy

WTF??

kira66715

Tazzy, she thought the NBCF was insulting in their demand to only deal with one of us. And unprofessional in putting out misinformation in the first place.



do they ask that all breast cancer survivors funnel their concerns through a single spokes person.



It's beyond insulting,this so called charity doesn't want to communicate with their target group.



And isn't great they've learned SO much about LE???? After they published an " expert" video series on it, and sold it to nurses . Always good to not spend your multimillion budget on solid research or true contributions to the health and prognosis of breast cancer survivors.



I appreciate the mods help, but they can't possibly see this as a victory. They're not that naive, I hope.

kira66715

Oh, the mods wrote me that they met Doug--the man who whined about how hard it was to pull the video--and his concern seems genuine.

Well, then fund vital research to treat breast cancer at all stages, be transparent about how much of your revenues go to family members vs. programs, show how your programs do anything more than fund mammograms and increase "awareness"

From Marie Claire:

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....

From our brilliant and media savy Cookiegal: 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.

Remember that woman I found on a Catholic chat from 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.

Supposedly, they want to be in touch: they have my email, and I don't need a mammogram funded by them. Just honest answers, and I sure won't get that.

Kira

dassi52

I just followed these postings. After having read that they claim LE is only temporary, why would I want to get myself upset and watch that garbage? My hat off to all of you who are out there to defend us from this misinformation. (Who feeds them these lies?). Too bad one can't sue them for it. It only underscores how many falsehoods we are fed, intentionally or not. Ler's hope that anyone who has LE knows better than that. BTW, I really believe that there are a lot of people out there, including MDs, who are quite ignorant when it comes to LE; Too bad they don't realize it themselves. 

PinkHeart

Hi,

I have a question regarding the Step Up, Speak Out lymphedema web site.   (SUSO)

I have had severe AWS-axillary web syndrome/cording since a few weeks out from my 7.5 hour BMX, ALND (19 nodes removed) surgery, and immediately followed by a 2.5 hour breast reconstruction with direct implants (that have since failed), for a total of a 10 hour unusually long surgery.  I started PT 3 weeks post op (needed to wait until 6 drains were out), then radiation started 8 weeks post op (had to wait until PT could get my arm to lift back far enough over head for beam to target breast.)  Everyone was clueless and never mentioned AWS -- except the PT-CLT.  Don't have to stand on my LE soapbox here, because you all know that many breast surgeons, plastic surgeons and radiation oncologists are clueless about or understand the seriousness and prevalence of LE --  let alone its bitchy friend AWS-Axillary Web Syndrome.

I haven't reviewed the SUSO site for about a year, and just went there again today.  I noticed in the Highlights column on the left that the following statement is now in bold letters:  "... have concluded that axillary web syndrome is a risk factor for lymphedema."  Further down, #3 states "Cording is associated with the risk or development of lymphedema."  (maybe it's always been there but I missed.)

Do you know of any additional studies or journal articles that are more recent that you could direct me to relating to this (personally experienced) fact about AWS and LE? 

Have any of your surgeons, rad oncs, etc. made these same statements about correlation between AWS and LE? 

Perhaps Dr. Corrine Becker or her surgeons that have trained with her? 

Also any new articles stating that whether cording is just scarring, or is lymphatic scarring?

I'm going to copy this and post on a few other threads.  Thanks everyone, I appreciate your feedback and experiences!

Here is link to SUSO, to the AWS page: 

http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm