Tag Archives: FREED

Living In Recovery: A Panel on Eating Disorders – 4/2/2014

Back in April, Kitty Westin and I had the pleasure of joining a panel with the University of Wisconsin Oshkosh on eating disorder recovery. It was done via Google Hangout, so the full discussion we had with the audience is archived.

It just so happens that the panel was scheduled on the same day as the reception for the Spring Eating Disorders Coalition Lobby Day. At first, Kitty and I were worried we wouldn’t be able to do it, but instead we had the pleasure of hanging out in person and crowding around my laptop. The visual quality isn’t the greatest, but the audio is fine. Kitty has some amazing things to share and I strongly encourage you to take the time to watch or listen!

A little about Kitty:

Kitty Westin is the founder and former President of the Anna Westin Foundation which is now known as The Emily Program Foundation. The Anna Westin Foundation was started by Anna’s family after Anna died of anorexia in 2000. Kitty is on the board of The Emily Program Foundation, the Eating Disorders Coalition for Research, Policy & Action, and she is a former member of the Minnesota Governors Advisory Counsel on Mental Heath, the Minnesota Mental Health Legislative Network and numerous other boards and counsels.
Since Anna’s death Kitty has spoken to millions of people about eating disorders through personal appearances and the media. She has been invited to tell her story to a variety of groups in Minnesota and across the United States and the world. Kitty has been an outspoken advocate for people who struggle with eating disorders, their families and friends, and professionals who work in the field.
Kitty has received numerous awards for her advocacy efforts including the EDC Advocacy Award, the Redbook Mothers and Shakers Award, the AED Meehan/Hartley Leadership Award for Public Service and/or Advocacy, the Park Nicollet Community Service Award and the National Eating Disorders Association Inspiration Award.

Special thanks to friend and EDC alumni Geneva Murray for the invitation and for putting the event together. Let’s do it again sometime!

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Truth in Advertising – Spring 2014 with the Eating Disorders Coalition

We’ve known for years that consumption of media that pushes thin ideals makes people feel worse about themselves, which in turn can lead to or reinforce dangerous disordered eating behaviors. That’s not just a bunch of body image activists talking – in 2011, the American Medical Association (AMA) did it’s own extensive research on the subject. The AMA concluded that “photoshopped” ads which portray unrealistic human bodies have such a detrimental effect on body image and self esteem that it became the organization’s official opinion to strongly discourage the practice. You can read about the AMA’s 2011 findings here on the AMA’s official site, the Huffington Post, ABC News, and EatingDisorder.org.

Briefing Kmac

Kathleen MacDonald of the Eating Disorders Coalition discussing computer-altered advertisements. Photo by Jim Knapp.

Unfortunately, the AMA doesn’t exactly have any authority to enforce that policy on the beauty and diet industry. However, Congress does, and with the strong precedent established by the American Medical Association, that’s exactly what we’re hoping to do.

On April 3, 2014, the Eating Disorders Coalition took to Capitol Hill for it’s 25th lobby day (wow!). I’m happy to say I’ve been there for approximately half of them, having attended twice a year since 2007. In addition to supporting the FREED Act, we’re terribly excited to be advocating for a new Bill that has been introduced with support out the door from both Republican and Democrat lawmakers. In late March, Representatives Ileana Ros-Lehtinen (R-FL), Lois Capps (D-CA), and Ted Deutch (D-FL) introduced the Truth in Advertising Act of 2014 (read the full bill text here). The Eating Disorders Coalition also put out a press release on their blog.

Rep. Ted Duetch and EDC Board President Johanna Kandel

Rep. Ted Duetch and EDC Board President Johanna Kandel. Photo by Jim Knapp.

This new Bill would ask the Federal Trade Commission (FTC), which already regulates false advertising as a means of consumer protection, to further study the effects of computer-altered ads involving the human form. A pharmaceutical company can’t put out a new drug saying it will do something that it indeed doesn’t do – that’s a deceptive advertising practice. That’s why all those really up-beat drug commercials with smiling people in perfect suburban neighborhoods have fine print at the bottom informing you they’re actors and that results may vary.  Essentially, if a diet or beauty product puts a model in their advertisement, but then photoshops the heck out of the image so much that the model doesn’t even recognize himself or herself, that’s false advertising, too. They can’t truly say that someone who used their product achieved those results, because they clearly didn’t.

What about Free Speech? Yeah, that was my first question, too. Obviously, artistic expression is a protected form of free speech. The Bill would not effect magazine covers or editorial content – only advertisements meant to sell products. The FTC already exercises that power over advertisements as a means of consumer protection, it’s just usually an authority used on literal words or statements. Given the strong empirical link between computer-altered media and negative body image, low self esteem, and disordered eating behaviors, it’s an easy argument to make that this is a matter of public health. The authors of the Bill have been very careful and clear in their wording of it, and there’s no doubt in my mind that Congresswoman Ros-Lehtinen would be championing the effort is there was any risk of it infringing on free speech. Not to mention, it’s less than three pages long – you can read the whole thing faster than you can read this blog post!

As leader of the Virginia Team, my group managed to meet with seven different offices the day we were there. We had very positive meetings in every office, and an especially good meeting with Congressman Robert Hurt. Meetings usually occur with Congressional staff, but Representative Hurt met with us personally and took a special interest in the cause.

Congressman Hurt

Virginia Team with Congressman Robert Hurt


By the way… this issue isn’t going away any time soon. TIME Magazine did an amazing write-up about the efforts on April 3 (please share and RT!):

Search #TruthInAds on Twitter to follow the conversation online, and use that hashtag when sharing information about the efforts!

Care about this issue? Can’t attend Lobby Day but still want to make a difference? Good news, you can! Remember, the Truth in Advertising Act of 2014 has already been determined to be zero-cost. Price of new legislation is usually one of the biggest barriers to getting new laws passed, in addition to finding ways of legislating that both parties can agree on. As previously stated, this Bill is already bipartisan!

If you live in the United States, asking your Representative in Congress to support a Bill is really easy. First, go here:


Find out who your rep is, and then from there you can locate their office contact info from their personal website. You can call or a write letter (or both!) and ask them to check out HR4341. If you have a personal connection or experience with eating disorders, let them know why this is so important to you. And of course, you can consider coming to DC in the Fall!

The next Lobby Day with the Eating Disorders Coalition is September 30-October 1. Mark your calendars now!

Finally, we bid farewell to our Policy Director, Jeanine Cogan. After 14 years she is ready to move on to other things, but the EDC wouldn’t exist without her amazing efforts and commitment to the cause. You can read her farewell statement here on the EDC blog.

Alright, here are some pictures from Lobby Day and the reception the night before. Please ask your rep to support Truth in Advertising, share this post with everyone, and please consider coming to advocate with us in the Fall!

Group Shot

Group shot! VA Team didn’t make this picture, unfortunately, since we had an early meeting. Photo by Jimm Knapp.

Reception 1

Some very attractive advocates having a very important conversation. Photo by Jim Knapp.

Reception 2

Kathleen MacDonald and EDC Board Member Jaye Azoff. Photo by Jim Knapp.


Another shot of VA team at the end of the day after a few others had to leave. Seriously, everyone on the team did an amazing job letting me drag them around Capitol Hill.

Capitol Night

We had the good fortune of some perfect weather. Photo by Jim Knapp.

Seth 1

This is Seth Matlins. If it wasn’t for him, the Truth in Advertising Bill wouldn’t exist. Special thanks to him for his passion, advocacy, and commitment to this issue. Photo by Jim Knapp.



Saw this a block away from the Senate buildings. It’s quite fitting, no?

Thanks for reading. Please contact your representatives, and maybe I’ll see you in DC in October?

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Eating Disorders: Not Just a Woman Thing – Huffington Post Live 7/31/13

The only way we’re going to change the landscape of mental health and eating disorders is to keep talking about it, which is why I’m so thrilled that The Huffington Post covers this topic fairly regularly. I joined their live segment on 7/31 along with Dr. Ted Weltzin, and eating disorder survivors Bryan Piperno and Brian Cuban (who’s first book is about to come out – congrats Brian!)

Here’s the full segment:

I took the opportunity to talk about the most important avenues to create change  – policy reform. Men aren’t always included in eating disorder studies for a variety of reasons. Men are less likely to seek help, to be diagnosed with an eating disorder, and most inpatient facilities don’t accept male patients. All of these factors make it harder to actually identify and locate patients to participate in research. That, and most large studies are funded through public money, and currently there are very little research dollars available for eating disorder research.

That’s one of the reasons I’ve been working and volunteering with the Eating Disorders Coalition for the past 7 years. The EDC advocates on Capitol Hill for mental health policy reform, and we always need more people to come and share their stories. If you’ve been  personally impacted by an eating disorder, whether suffering from one personally, watching a loved one struggle, or in your professional life, we want you to join us! Check out http://www.eatingdisorderscoalition.org for more info.

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Interviews with Eating Disorder Advocates – The Kari Adams Show 4/17/13

This past Lobby Day with the Eating Disorders Coalition, Kari Adams of The Kari Adams Show joined us to check out the policy side of the fight against eating disorders. Already a big advocate for positive body image and self-acceptance, Kari was a great fit w/ the EDC. She interviewed a few advocates that were in town, including EDC President Johanna Kandel. Check out the videos below to get a feel for what drives EDC volunteers, why we’re passionate about eating disorders, and what keeps us coming back to Capitol Hill to promote change:

Johanna Kandel is the current President of the Eating Disorders Coalition, founder of the Alliance for Eating Disorders Awareness, and author of Life Beyond Your Eating Disorder.

Suzanne Lewandowski is the founder of the Eating Disorders Collaborative of Massachusetts and a current Junior Board member of the Eating Disorders Coalition.

Seda is the founder of the Cambridge Eating Disorder Center, which offers a spectrum of recovery services including residential and outpatient programs.

Gail is recovered from an eating disorder and the founder of the F.R.E.E.D. Foundation, a fundraiser for treatment scholarships. You can read more about Gail and the foundation here.

We actually don’t know who this guy is. I hear they found him wandering aimlessly around the House of Representatives, clearly sleep-deprived and mumbling something about locating the nearest Metro stop.

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No More Gender Bias – EDC Congressional Briefing, April 2011

In April 2011, I was given the honor of presenting at the Eating Disorders Coalition’s Congressional Briefing. I can’t believe it’s already been two years – this was before I had even started this blog! Until recently, this video (along with the other speakers) had been sitting on a hard drive somewhere, but it’s finally made it online. Below are some excepts, or just scroll to the end for the full video.

I am proof that eating disorders DO NOT discriminate.  It is not a disease of vanity. It is not a “woman’s disease.” It is not a “phase.” It is a life-threatening mental illness epidemic. Despite the data we have that demonstrate that millions of Americans – men and women alike – currently suffer from eating disorders, the shoulder-shrug excuses that are used to trivialize and dismiss eating disorders persist. Despite the fact that upwards of 20% of all anorexics will die as a direct result of their eating disorder, there is a lack of awareness in virtually every level of support that should be there to help someone. From the social level with friends and family, to health care providers, emergency room doctors, and of course, insurance companies.

When I should have been making friends, focusing on school work, and growing into the person I was going to become, I instead lost two years of my life to anorexia, two years of my life that I can’t ever get back. My senior year in high school, I had a falling out with some close friends, and fell into a deep depression. I lost my appetite, and couldn’t sleep. I didn’t know what was happening – everything occurred so quickly. Though I had visibly lost weight, it was a few months after my problems began that I ever bothered weighing myself. Co-workers who didn’t know me well would compliment me on the weight I’d lost. My friends could tell something was wrong, they just didn’t know how to approach it. Not knowing what was wrong myself, when they’d ask if I was OK I would insist that I was fine (a word that a good friend of mine refers to as ‘the real F-word’). Eventually, someone at work asked me how much weight I had lost. The thought hadn’t crossed my mind, and out of sheer curiosity I went home and weighed myself, and my bitter relationship with numbers began.

In those early months I never had ‘goal weights’ or anything else – it was all curiosity. The more I lost, though, and the more my body reflected it, the more I started to wonder how low I could actually get. It’s important to note that, at the time, you could say I was on auto-pilot. I was aware of what I was doing but I was never really in control. Our bodies depend on the intake of food and on regular sleep to function properly, and when deprived of those things your judgment and emotions can get quite disrupted, among other things. I didn’t just wakes up one morning and decide that I was going to be anorexic, any more than one might decide to become a drug addict or to have cancer.

My family and friends could tell something was wrong, but they didn’t know the right questions to ask. I skipped enough classes that my teachers started to worry, too, and even the guidance counselor checked in with me. They could all see I was losing weight very quickly, but they danced around it, wondering if I was depressed or if things were “OK at home”. Maybe they just weren’t used to screening eighteen year-old males for eating disorders. Either way it’s not as if I blame them, I was as clueless as they were. I went through my own denial, listing off all the reasons that I couldn’t be anorexic. “That only happens to models.” “You’ve just been depressed and haven’t felt like eating.” “It’s not that serious, things’ will be OK.”

… My story is not a unique one, and until we have the FREED Act, millions of others will continue to struggle. Children are being exposed to an endless stream of messages and advertising that tells them they should dislike their bodies, and dieting is becoming common among elementary school girls who haven’t even started puberty. This is a problem which is only going to get worse until there is a real intervention on the federal level.

By passing the FREED Act, Congress has the power to give health professionals the tools they need to identify, treat and prevent eating disorders effectively. They have the power to make sure no one has to go through what I went through ever again.

Congress has the power to make sure no one else has to become a statistic. I have friends who are struggling with eating disorders who I’ve encouraged to come to Capitol Hill with me for EDC National Lobby Day. Every day and every month that they don’t get the help they need to recover, I wonder if they’ll be able to make the trip to Capitol Hill with me, or if I’m going to have to bring their picture and memory instead.

And so I’m asking. I’m pleading. Pass the FREED Act. Thank you.

You can access the full speech transcript here.

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Eating Disorder Advocacy in Washington, DC – 4/17/13

I just got back from Washington, DC for another fantastic day of advocacy on Capitol Hill. I’ve been volunteering with the Eating Disorders Coalition (EDC) for six years now, and I’m honored every time to take part in it.

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All photos courtesy of Jim Knapp unless noted.

The EDC advocates for legislative reform to better improve access to treatment, advance research, and educate both professionals and the public about eating disorders. If you or someone you know have ever had to seek treatment, then you know it’s often difficult. This is because of a complicated mix of disputes over diagnosis, established guidelines, and a misunderstanding of eating disorders.

Even though the American Psychiatric Association has compiled very specific and detailed guidelines for treatment, insurance companies have no obligation to follow them and often make up their own guidelines – which physicians often don’t have access to even while treating patients. So even if treatment is approved, it’s hard to know if it will be the kind of comprehensive treatment a particular patient needs.

Jeanine Cogan & Kathleen MacDonald. Jeanine is the EDC Policy Director, Kathleen is the former EDC Policy Assistant.

Jeanine Cogan & Kathleen MacDonald. Jeanine is the EDC Policy Director. Kathleen is the former EDC Policy Assistant and now applies her expertise at Kantor & Kantor LLP.

The legislation the EDC is advocating for is called the Federal Response to the Elimination of Eating Disorders (FREED) Act, and it would help address these problems. It also contains provisions for helping medical professionals know what to look for and how to treat the specific physical health problems that can threaten the lives of eating disorder patients. You can read a full summary of the FREED Act here, along with some background and history here.

[Fun fact: the idea behind FREED, the elimination of eating disorders, was also the inspiration for my blog title!]

The EDC wouldn’t exist if not for the tireless work of the advocates who make up the organization. Spring 2013 marks the first event under the leadership of new EDC President Johanna S. Kandel, author of Life Beyond Your Eating Disorder. A common statement from first-time advocates is often: “What difference does my being here make?”

Well, Johanna came to Capitol Hill ten years ago to lobby with the EDC and got a meeting with her Congressional Representative, Ted Deutch. Their meeting educated him about eating disorders and their severity, as well as putting a human face on them. We can quote statistics all day long, but sometimes a personal testimony says more than amount of data.

Now in 2013, Representative Deutch is championing the FREED Act in the House of Representatives and has made eating disorders a priority during this Congressional session – and it’s all because of Johanna’s hard work and advocacy.

Johanna Kandel (far left) with EDC board members, guest speakers, and Ted Deutch.

Johanna Kandel (far left) with EDC board members, guest speakers, and Ted Deutch.

Myself and Ted Deutch after the briefing. So grateful for his commitment to ending eating disorders & the EDC! (Also, when did my hair get so long??)

Myself and Ted Deutch after the briefing. So grateful for his commitment to FREED & the EDC!
(Also, when did my hair get so long??)

I also want to say thanks to the offices that took the time to meet with the Virginia Team: Senator Mark Warner, Senator Tim Kaine, Representative Bobby Scott, and Representative Morgan Griffith. Virginia is already a leader on eating disorders with HB1406 establishing screenings in public schools, and I’m looking forward to Virginia carrying the torch and seeing our Congressional reps take up the cause!

Our next Lobby Day is September 18, 2013. Even if you can’t make it to DC, there are plenty of ways you can make a difference and advocate for FREED! Consider doing the following:

  • contact the local offices for your Congressional Representatives in your district to meet with them and/or their staff
  • write letters to their offices and share your own stories about how eating disorders have affected your lives, asking them to support FREED
  • donate to the EDC to support their ability to advocate on Capitol Hill, or hold a fundraiser of your own

Shout-out t0 Kari Adams of The Kari Adams Show for making the trip to DC and cover the policy side of eating disorders! Below is an interview she did with Gail Schoenbach, the Executive Director of the F.R.E.E.D. Foundation and current EDC Treasurer, along with some other pictures from Lobby Day!

Some seriously perfect weather on Captiol Hill.

Some seriously perfect weather on Captiol Hill.

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Ran into the Minnesota team on our way to the briefing! (Thanks Britt for the picture!)

Team Leader meeting at the reception the night before. So honored to be working with so many amazing people! Also, I'm the only one with my eyes closed.
Team Leader meeting at the reception the night before. So honored to be working with so many amazing people! Also, I’m the only one with my eyes closed.
EDC President Johanna Kandel introducing the next speaker at the Congressional Briefing.

EDC President Johanna Kandel introducing the next speaker at the Congressional Briefing.

Team leader brainstorming!

Team leader brainstorming!


Myself and other advocates during the reception.

Myself and other advocates during the reception.

Full photo sets available on the EDC Facebook page. Videos from the briefing will be made online shortly. For past Lobby Day coverage and testimonials, click here to search for all posts tagged ‘FREED’.

So what are you waiting for? Come join us in Washington, DC and help us END eating disorders!

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In Remembrance: Reanna’s Story

In my last post about Lobby Day, I mentioned a story shared at the Congressional Briefing by mother Tracy Smith, who’s daughter Reanna died from her eating disorder while waiting for treatment. Tracy has agreed to let me share her testimony here to further spread the truth about the severity and life threatening reality of eating disorders. I’m deeply grateful to Tracy for her courage and willingness to share this story, and hope that others will learn from it. 

Please note that some of the specifics regarding her daughter’s death may be difficult to hear and are rather emotional, and if you are in recovery from an eating disorder, please take care of yourself while reading.

The following speech was given by Tracy Smith on Capitol Hill on April 24, 2012, at a Congressional Briefing held by the Eating Disorders Coalition as testimony to advocate for the passage of the Federal Response to Eliminate Eating Disorders (FREED) Act.

Tracy Smith testifies on behalf of her daughter.

It has been seventeen months since my baby was taken.

My Family has been devastated by an eating disorder in the worst way possible. On Nov 15, 2010, my Daughter lost her life to an eating disorder. In less than twenty-three months this disease came into our lives and took over my child. Physically, mentally emotionally and in every aspect that you can imagine. Due to misdiagnoses by her pediatrician, lack of education and no coverage for her condition by medical insurance we were alone in the very short battle!

This is Reanna Yvette’s Story.

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Eating Disorders Coalition Spring Lobby Day 2012!

Do you know what the FREED Act is? It’s the Federal Response to the Elimination of Eating Disorders, and it’s a bill that we need YOUR help to pass.

For over a decade, the Eating Disorders Coalition (EDC) has been active on Capitol Hill working with the federal government to help make eating disorders a federal health priority. With the highest mortality rate of any mental health disorder, we need a bill like the FREED Act to help those who suffer from eating disorders get the help they need and deserve.

I’ve been volunteering with the EDC for 5 years now, and am currently a Junior Board member. Sometimes people ask me if I really think lobbying is worth it because of how complicated and partisan politics can be. I’ll admit, it can be discouraging. But those in office really do pay attention and listen to people who take time out of their lives to come and discuss issues with them. There’s so much misinformation out there about eating disorders that we need people who have had real-world experience with them to come and educate lawmakers. Putting a face and a name to a real story goes a lot farther than any statistics, no matter how shocking or upsetting they might be.

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Recovery Mantra

This post is dedicated to a dear friend of mine who very recently made the decision that she needs to go inpatient.

“You can do this.” 

November 12, 2011, marked a big milestone for me. The culmination of two years of running, six weeks of physical therapy, and over three months of intense training all added up to my sprinting across the finish line for the Richmond Half Marathon – a total distance of 13.1 miles. Not to mention, none of it would have been possible if I was not recovered.

The past few months, I’ve found myself a little excited to talk to people about it and discuss things like training and nutrition. I’ve gotten up early in the morning to make sure I have time to go running before work, and eat a good breakfast to support all the extra activity I’ve been doing. As I got further into training and my days and weeks were being planned around my training schedule, I realized just how similar it was to recovery.

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Another Successful Lobby Day!

I’m back from DC and wanted to do a quick post about it, though I’ll try to write more on it later. Working with the Eating Disorders Coalition has consistently been one of the most rewarding things I’ve ever done, and yesterday was no exception. I think we had some of the best weather in probably two years – we’ve lobbied in intense rain storms and in blistering heat! Yesterday, though, was perfect:

Clear skies over DC.

Fellow lobbyists crossing Capitol Hill to the House of Representatives.

Lobbying can be tiring, exhausting work, but it’s worth it! We dropped in to see Congressman Jim Moran to thank him for his support – he’s already signed on as a co-sponsor of the FREED Act:

Jim Moran takes time out of his busy schedule for a photo with EDC volunteers!

We always have a fair number of first-time lobbyists, and the combined sense of nervousness and excitement is pretty consistent. The idea of going into meetings with strangers to talk about your experience with eating disorders can be very daunting. It’s such a powerful thing, though, to be there with so many other people who understand the issue and are speaking up about it that I think it breeds a sense of confidence that many on arrival weren’t expecting to find in themselves.

That’s because when we all come together and share in our triumph and tragedy, it gets to the heart of the matter. Eating disorders are serious illnesses that make families go bankrupt, ruin lives, and sometimes take lives. We need to take all that raw emotion, hope, and pain contained in each of our stories to the people who are in a place of power to make a real difference – elected officials. Eventually, they’ll have a chance to vote on the FREED Act, and it’s up to us to inform them why it’s so important that they pass the Federal Response to Eliminate Eating Disorders.

If you’re reading this and have a story, then I want YOU to join us for future lobby events! Even if you can’t make the trip to DC, there plenty of other ways to get involved. You can support the EDC by donating, or participating in the letter writing campaign.

Alright, one last picture! Two people who really inspire me, Kitty Westin and my dear friend, Kathleen MacDonald:

Kitty Westin, myself, and Kathleen MacDonald at the EDC reception, 10/3/11 (photo credit Jim Knapp)

Do you want to help improve treatment options, research initiatives, education, and preventative action for eating disorders? Then come lobby with us!

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