The National Eating Disorder Association (“NEDA”) is in chaos. It has lost its identity. It has lost its message. It has no vision. And whatever purpose it once had has become misdirected as it is willing to sacrifice those very lives whom they were formerly dedicated to helping … on the altar of politics and social injustice.
The eating disorder industry as a whole is fractured, wandering without any type of unified strength or purpose. Tragically, our children and loved ones continue to pay the ultimate price for this dysfunctionality. And in these drastic times, drastic measures are called for … and past due.
NEDA’S HISTORY AND PURPOSE
NEDA purportedly started on May 4, 1987. According to NEDA’s own records, “In 2001, Eating Disorders Awareness & Prevention and the American Anorexia Bulimia Association merged to form the National Eating Disorders Association. At the time, Eating Disorders Awareness & Prevention and the American Anorexia Bulimia Association were ‘the largest and longest standing eating disorders prevention and advocacy organizations in the world.’”
According to its website, NEDA “supports individuals and families affected by eating disorders, and serves as a catalyst for prevention, cures and access to quality care.”
And yet, skepticism began to arise about NEDA’s claims. Researcher Ben Radford wrote in the journal, Skeptical Inquirer, “I found many examples of flawed, misleading, and sometimes completely wrong information and data being copied and widely disseminated among eating disorder organizations and educators without anyone bothering to consult the original research to verify its accuracy”.
Radford further stated, “ … miss-leading [sic.] statistics and data have been ignored by organizations like the National Eating Disorder Association who has not released data for incidence of anorexia from 1984-2017.”
Radford reported that each agency continues to report incorrect numbers assuming that someone else has checked the accuracy.
WHAT DOES NEDA DO?
According to public sources, NEDA “holds various Walks throughout the United States at different times during the year. The Walks are fundraising events that also serve the purpose of ‘uniting communities and raising awareness about eating disorders.’”
As for these “Fun Walks,” the crowds consist almost exclusively of clinicians, treatment providers, patients and their families … the vast majority of whom are white and focused on those suffering from anorexia nervosa.
These Walks are organized by local foundations or interested persons in the communities. And in general, the proceeds realized from the Walks were split evenly between NEDA and the organizer. This certainly is logical since a great deal of local planning and work goes into hosting a walk. But, this too changed. NEDA made the decision to keep 100% of the proceeds from these Walks.
Organizers, foundations and persons on the local level who do the actual work, who drum up support, who call upon their financial resources and support systems would not be rewarded. Local organizations which relied upon their portion of the revenue generated from these Walks suddenly found themselves in a place where they had to cut back on local support, reduce their staff or find new ways to make up for this loss of income.
NEDA also has a “call in helpline.” This helpline is in operation Monday – Thursday from 9:00 a.m. to 9:00 p.m. and Friday from 9:00 a.m. through 5:00 p.m. Undoubtedly, this helpline has assisted in connecting those in pain with treatment providers.
NEDA has monopolized putting its brand on the annual eating disorder awareness week which takes place during the last week in February.
NEDA also awards grants and funding in a de minimus amount every year. For all of its efforts, should it be applauded or should much more be demanded?
Since NEDA is a 501(c)(3) entity, it need not disclose the sources of its funding. However, we do know that in its most recent IRS Form 990 filings, NEDA reported revenue over the course of the past few years between $3.9 million and $4 million annually.
So, from where does its funding come?
The only “Platinum Sponsor” listed by NEDA is RBC Capital Markets. RBC markets itself as, “RBC Capital Markets is a premier global investment bank providing expertise in banking, finance and capital markets to corporations, institutional investors, asset managers and governments around the world.” RBC stands for Royal Bank of Canada. Other treatment centers owned by private equity firms are also listed as sponsors.
Then there is the issue of the location of the headquarters of NEDA. With a 501(c)(3) entity, ordinarily one would seek to minimize as greatly as possible the operating expenses of the company. And yet, in 2011, NEDA chose to relocate its offices from Seattle to one of the most expensive locations to operate a business in the world, midtown Manhattan. Then CEO, Lynn Grefe, president and CEO of NEDA stated, “Thanks to the tremendous generosity of a donor, the move to our stellar, new office space was possible. Establishing a permanent presence in New York City is a strategic move for NEDA, not only unifying our staff in the same time zone, but placing us in the heart of the media capitol.”
However, some of the most expensive business space in the United States is certainly not necessary especially since social media is available and effective anywhere else in the United States.
And the question must still be asked, what does NEDA really do? Perhaps we should ask instead, what does NEDA not do?
WHAT NEDA DOES NOT DO
We know that NEDA does not do any research into the biological, genetic or metabolic causes of eating disorders. It does not conduct research of any substantive means.
We also know that NEDA does not directly administer treatment to any people suffering from eating disorders.
NEDA does not operate treatment centers, research centers, or lobbying centers. It appears as if it exists for the sole purpose of perpetuating its own existence.
Certainly, NEDA has other issues with which it must contend. Issues that are beginning to strangle whatever mission and purpose it may have once had.
No Support for Others in the Industry
As the entire eating disorder industry is aware, on Monday, July 15, 2019, Dr. Cindy Bulik and other research scientists and doctors from across the globe announced the results of their study on anorexia nervosa. This study brought to light the genetics and metabolic aspects of the disease. The study could result in treatment breakthroughs and a greater understanding of the disease. Internationally, news groups, print media and television newscasts featured the study.
The parent group F.E.A.S.T. featured the study and even conducted a video presentation with four of the primary doctors overseeing the research study. Social media was ablaze with the study. Dr. Bulik appeared in podcasts and radio programs.
As for NEDA, the group which is ostensibly supposed to represent the entirety of the eating disorder industry and community? Nothing. Nada. No press release. No social media activity whatsoever. And the question must be asked: Why that is? How could they miss one of the biggest, most significant announcements in the industry?
Inflammatory social agendas published
The following Tuesday, July 23, 2019 NEDA found itself enveloped in a firestorm over a controversial post on its Facebook page. (A future article will deal with the disturbing issues discussed in that post and as such, this issue will only be briefly highlighted herein.) The controversial post started with the following picture:
Predictably, the comments following the picture quickly turned ugly, profane and polarizing. Sadly, the comments were not all from eating disorder patients and people suffering from this disease. Some clinicians wallowed in the mud. Accusations of being a bigot, a white supremacist, of fear mongering permeated the post. A gentleman who admitted he was struggling with his eating disorder was told he was “full of shit.” Because of the increasing vitriol, eventually NEDA pulled the post. But, the damage had been done.
The following day, NEDA issued the following statement:
“To the NEDA Community,
Last night we removed a post from our social media channels that addressed the societal factors that influence our perception of eating disorders. Removing yesterday’s post was in no way a retraction of NEDA’s commitment to important social justice issues, rather it was a response to the harmful discourse in the comments section.
The priority of NEDA social media channels is to provide a place for support, information, education and advocacy for all members of the eating disorders community, and we’re thankful for the emotional labor of those who contributed and responded to the post. We are grateful and supportive of those who advocate for communities traditionally left behind in the dominant narratives around eating disorders, in particular, the artist Alyse Ruriani Design, and author of the quote Melissa Fabello, PhD.
To help ensure productive conversations on our channels, we will delete comments that:
• Are in any way threatening
• Engage in name-calling
• Include personal attacks
• Create a harmful environment
We aspire to create spaces that affirm everyone in the eating disorders community, no matter their size, race, gender, sexual orientation, age, socioeconomic status or ethnicity and provide resources that support all individuals and families affected by eating disorders.
Now, what seems to be missing from that statement? There is no hint of an apology to those persons suffering from this disease who were hurt, victimized and on the receiving end of bullying statements in that thread. No apology was extended to those persons in that post who stated they were leaving NEDA, that they would no longer support NEDA and would seek their support from local groups. One must ask whether these souls are merely the first ones to be sacrificed on the altar of political correctness and social injustice?
This non-apology statement, presented in the most myopic, intolerant and militant manner, is a “hell-bent for leather” reaffirmation of the social injustice path upon which NEDA has chosen to stake its reputation and future without accepting any responsibility for its own misbegotten conduct.
And as for affirming everyone in the eating disorder community, that may be true … unless you are a dad of a child suffering from this disease.
Dads need not apply
Approximately nine (9) years ago, a fellow attorney, a father approached NEDA about a bold, new program, a “Dad’s Initiative.” This man’s daughter had been struggling with eating disorders for years. Her treatment was, as per the usual standard, expensive. And yet, he persevered. He wrote a book on the relationship between a dad and his daughter. He had passion, intelligence, drive and vision.
He assembled a board of advisors which included some of the most recognized and respected names in the industry. The Dad’s Initiative involved a nationwide campaign designed to educate, empower and encourage dads to take a more active role in their daughters’ lives and, in the case of those suffering or in recovery from an eating disorder, to become more active participants in their daughter’s treatment and recovery.
This Initiative had definable goals and a step-by-step process to implement and accomplish all of the goals. The benefits of the Dad’s Initiative were presented to NEDA. And at first, NEDA paid lip service to adopting and implementing this Initiative. NEDA asked this man to join a steering committee that purportedly was charged with, amongst other tasks, analyzing the Initiative and moving it forward. The Initiative was published in Renfrew’s then monthly magazine. Goals included having over 100 dads attend the next NEDA Conference. (What ever happened to those?). The future looked bright. In 2012, NEDA was going to embrace dads and kick off this program. And then …
Radio silence. Requests to implement the Initiative were met with … silence. NEDA placed it on the back burner and then … buried it. And to this day, dads are not represented, there is no direction in the industry to include dads, and dads for the most part are not even discussed by NEDA. They are the forgotten victims. And our children continue to suffer as a result.
Clearly, NEDA has no mission. Its vision has been lost. NEDA has betrayed the trust placed with them. And families, our children, our loved ones suffer as a result.
Organizations become known by their leaders. They are the face and the voice of the organization. And when their voices are unknown or become muted in the face of adversity, there is a price which must be paid.
The buck must and does stop at the top. Leaders of organizations, businesses, foundations or corporations justifiably deserve accolades when their vision, passion and leadership result in benefits not just for their charges but society as a whole. So too, must those leaders bear the consequences for their failures, short sightedness and poor decisions.
NEDA is rudderless, adrift with no firm purpose or reason to exist. Its vision, if any, is limited by its own blinders … and blunders. If chaos exists, an organization becomes particularly susceptible to misguided voices and harmful influences. When its social media presence results in harm to those whom they are charged with protecting and they knowingly and intentionally do not mitigate the damage nor even apologize for the harm they caused, then that falls squarely on the head of the CEO of that organization.
The mistakes, missteps and harmful conduct perpetrated by NEDA lie with its CEO … And if NEDA does not take proactive steps to replace an incompetent CEO, what does that tell us about this organization?