Guest Post: NEDA Responds to Recent Criticisms

Carrie’s Note: One of the reasons I started ED Bites was to create a dialog between different people in the eating disorder field. I don’t expect everyone to agree all the time, and frankly, that would be kind of boring. I posted Holly’s piece a few days ago because I thought she raised some good, interesting points about the need for research in the ED world. Yesterday, I got an email from NEDA asking to post their response to her comments. Seeing as they have a right to respond and the fact that I want to facilitate the open exchange of ideas, I am posting it here.


On April 7, 2013 the blog ED Bites published a guest post by Holly J. Arthur, which outlined her decision not to participate in a National Eating Disorders Association (NEDA) Walk and overall concern with the lack of progress in the field of eating disorders, as it relates to research. While we fully respect and appreciate the need of any public forum, we want to correct the record.

Contrary to the belief that NEDA has not allocated research funds, our history (2002-2009), evidences that NEDA allocated $180,000 in fifteen (15) Young Investigator Grants to help researchers initiate their research careers. The funds were designed to allow these investigators to gather pilot data for larger grants, and the vision and scope of the program was reflective of NEDA’s organizational limited size and budget during that time. NEDA, as with any nonprofit organization, continues to assess our challenges and opportunities, build on our skills and strengths, which included moving our headquarters from Seattle to New York.

Once accomplished, NEDA’s Board of Directors then updated strategic priorities, by directing a task force and Research Advisory Council to determine the larger needs in the field. In the fall of 2012, a recommendation was accepted to create the Feeding Hope Fund for Clinical Research and Training. The goal, to raise $500,000 specifically for this effort, was announced during National Eating Disorders Awareness Week 2013. The grant submission process has begun and the deadline for researchers to submit Letters of Intent to apply for a grant is still a week away.  Grants will be awarded on an annual basis. To date, the fund has raised $97,000.We are optimistic and expect to award several large grants by the end of 2013. All of the information is available on our website.

NEDA’s programs, services and organizational priorities all take into account the complexity that an individual and their family faces when confronted with an eating disorder. Our understanding that there are a myriad of contributing factors to an eating disorder is informed by the experts and researchers in the eating disorders field, and is evidenced by our programs, services and new research initiative, the Feeding Hope Fund.  Media literacy is a small part of what NEDA does, representing approximately 7% of our budget.

NEDA’s program dollars (77% of our budget) support vital program areas such as:

  • NEDA’s Parent, Family and Friends Network (PFN), which includes the Making Connections quarterly magazine, PFN Webinar Series, Loss Support Network and NEDA Navigators program of trained volunteers supporting and guiding people throughout the country to help.
  • NEDA’s Information and Referral Helpline, which is expanding its hours in the upcoming year to meet the growth in contacts and the needs of individuals on the West Coast.
  • National Eating Disorders Awareness Week, which includes speaker training, educational materials, activity guides, and event coordination. It is the largest outreach effort on eating disorders in the nation, resulting in significant increases in help-seeking behavior.
  • Annual NEDA Conference, which brings together families, researchers and individuals in recovery for education, information and support.
  • Media Watchdog program, which advocates for responsible media messaging.
  • online community to empower and provide support to teens and young adults.
  • Solutions Through Advocacy and Reform (STAR) Program, which coordinates legislative advocacy, recently leading to a new education and school screenings law in Virginia, legislative activity in other states, and the formation of the National Eating Disorders Awareness Caucus on Capitol Hill.
  • NEDA’s  website with comprehensive information about eating disorders and treatment options, including NEDA Toolkits for Parents, Coaches and Athletic Trainers, and Educators, which are available to the public and distributed free of cost to schools around the country.
  • NEDA’s new online forums, Click-to-Chat Helpline feature, and new Online Screening Tool, provided in partnership with Screening for Mental Health Inc. Released in mid-February, over 9,000 people have taken the screening and received referral information if they screened positive for eating disorder concerns.

In addition to NEDA’s programs and services, this fiscal year the NEDA Walks returned $135,000 to eating disorders organizations around the country through our NEDA Network to support their local programs and services. NEDA Walks also connect those individuals and families locally that support each other and forge lasting friendships through this experience.

The NEDA Walks—and NEDA as an organization—are about more than “the evils of Photoshop and the ill-defined need to ‘raise awareness.’”  NEDA raises awareness with a well-defined purpose: to increase the number of people that we are directing to help and resources. Our data indicates a direct relationship between the rise in awareness of eating disorders (promoted through programs like NEDAwareness Week and the NEDA Walks) and an increase in the number of people accessing help and resources. Everything we do—from prevention to education to support programming to legislative advocacy to research funding—helps those affected by eating disorders and their families to get the help and support they need.

This is where your money is going. This is why your money helps to save lives.


Lynn Grefe

President and CEO of the National Eating Disorders Association (NEDA)

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8 Responses to “Guest Post: NEDA Responds to Recent Criticisms”

  1. Thanks for posting both sides of this issue. It’s really interesting. It’s nice to see that NEDA understands the need for research. But we have a long ways to go. As someone who works in biological research, albeit in an unrelated field, it is shocking how expensive it is. We spend thousands of dollars a month just on consumables to keep our lab running and a piece of equipment under $5,000 is a bargain.

  2. Glad to see the exchange, Carrie. Thanks for posting it. I continue to be, as you know, a strong supporter of NEDA.

  3. It’s a big family and I believe we all need to get involved whereever we can, as well as speak up as we would in a family.

    There WILL be disagreements in a family about direction and motives and emphasis and that’s a good thing.

    Every single person I know of involved with EDs has good intentions and we’re all working toward the same goal: better outcomes for patients. Meanwhile, we will all have to continue to discuss the “how.” Transparency helps. Goodwill helps a lot.

  4. Thanks very much for printing this. I’m a strong supporter of NEDA. As a parent with a special interest in the science of eating disorders and evidence-based treatment, I have found them to be the very gracious, open, and welcoming. It’s been a great experience working with NEDA on projects and serving on the PFN.

  5. Thank you for providing this forum, and allowing discussion to take place in the open, Carrie. The sharing of ideas and communication is vital for us all to avoid falling into the ways of the eating disorder ‘bully’ which thrives on darkness and doubt, and loves to conquer and divide; isolate and destroy. Unity is vital in overcoming eating disorders. If we have a doubt, share it. Allow someone else to show us the light; look, listen and absorb. From whatever corner of the ED field we come from, let’s walk together.

  6. Very glad to see such a good post about criticism..Thank you..

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