Countdown to Lobby Day!

Dear EDC Advocates,

In just a little over one week, advocates from across the country will descend on Washington, D.C., to advocate at ‪#‎EDCNationalLobbyDay‬ on May 13, 2015. We are so excited to see you again, and also to meeting those of you who are coming to Lobby Day for the first time. If you haven't yet registered, please do so as soon as possible: www.eatingdisorderscoalition.org
During #EDCNationalLobbyDay you will attend a very heart-felt, inspiring and educational Congressional briefing hosted by Congressman Ted Deutch and Congresswoman Ileana Ros-Lehtinen.  You can learn more about the Congressional briefing by clicking on this picture ------>
Or by reading these two EDC blogs:
1.  http://eatingdisorderscoalition.blogspot.com/2015/04/may-2015-congressional-briefing.html

2.  http://eatingdisorderscoalition.blogspot.com/2015/04/more-details-on-annas-law.html

We are so humbled to advocate with you and we are so honored that you have chosen to use your your powerful voice as we advocate together against the insidious disease we call "eating disorders." Be well and we'll see you SOON! 

#TheTimeIsNow #AnnasLaw

Kitty Westin & Anna's Law

Dear EDC Advocates and Activists,


Please read the following very powerful, emotionally raw and moving words written by Kitty Westin, Anna's mom.  Then, please register to join us on Capitol Hill for EDC National Lobby Day on May 13th. #TheTimeIsNow #AnnasLaw
 ________________________________________________________

Written by Kitty Westin:

It is hard to find the right words to express how I feel about the Anna Westin Education, Prevention and Training Act of 2015 (Anna’s Law). Honestly, I am as conflicted as I have ever been. I have experienced a combination of great sorrow, elation and accomplishment over the past few days.

Anna Selina Westin

Great sorrow. How can I not feel pain and sorrow right now? Anna died from an eating disorder. Anna had her whole life ahead of her. She was an amazing young woman with hopes, dreams and a bright future full of possibilities until she got sick. Her life was cut short by a disease that can be effectively treated if given access to the appropriate level of care for the amount of time it takes to recover. It is excruciatingly painful to remember how much she suffered and how helpless we felt when we were fighting for her life at the same time we were fighting her insurance company. The pain of having a child die does not go away. It does become bearable over time and I have found a way to live without Anna much like people find a way to live without a limb. You adapt, adjust, form scar tissue, and find a new way to be in the world. Life goes on, you figure out how to go on as well but you never stop longing for your child or wishing for just one more hug, one last word or one last chance to make it better. Our family found a way to transform the horror of Anna’s death into something positive by putting energy into fighting eating disorders and trying to help others avoid a similar fate as Anna. Fighting eating disorders and helping others who are desperately fighting for their lives has helped me heal and given me strength and a purpose. If I have helped just one person live then I feel like Anna did not die in vain.

The Anna Westin Education, Prevention and Training Act is not about me or my family and it is not about Anna. It IS about the millions of people who suffer from eating disorders who do not get identified, diagnosed, or treated effectively because so many people lack even basic knowledge of eating disorders.  

Elation. Anna’s Law will help millions of people who suffer from eating disorders. Anna’s Law will expand educational opportunities to health care professionals across the US and in turn help those same professionals be better equipped to recognize, diagnose and treat eating disorders. Anna’s Law will give the millions of people who struggle with eating disorders a fighting chance!

EDC National Lobby Day

After 15 years of hard work and commitment there is movement in the fight against eating disorders at the Federal policy level. It has been an uphill struggle to get attention to eating disorders and to get the US Congress to recognize that eating disorders are life-threatening illnesses that need legislative action. I have been involved with the Eating Disorders Coalition for Research, Policy and Action for 15 years. I am proud of the work and accomplishments of the EDC. We have given citizen advocates a voice, Members have listened and heard our voices, we have influenced legislation that has helped millions of people who struggle with mental health issues, yet we have been unable to pass legislation specifically dealing with the multitude of issues those affected by eating disorders face.

I know that passing Anna’s Law will be a huge step in the right direction. Educating health care workers to identify, diagnose, refer and treat people who are struggling with eating disorders is essential if we expect to win the war against eating disorders. I hear far to many stories from sufferers and their families and caregivers about lost opportunities to intervene early and quickly in order to stop an eating disorder before it becomes entrenched and before it causes irreparable damage. Anna’s Law is designed to address the lack of training and education among health care professionals that makes it nearly impossible for most people to get early intervention and early treatment for an eating disorder. We know that the best treatment for an eating disorder is prevention. And we know that the sooner an eating disorder is diagnosed and treated the higher likelihood of complete recovery. Let’s pass Anna’s Law, it will improve the chances for compete recovery from an eating disorder for everyone who struggles.

Accomplishment. Fifteen years ago I buried my daughter, Anna Selina Westin. She was just 21 years old. If you have not had to bury a child you cannot even imagine the suffering, the unbearable pain, the desire to give your own life willingly if your child could have one more day on earth. Anna was an amazing young woman. To know her was to love her. She had spunk, talent, a personality that endeared her to everyone, a lively spirit and a huge heart that she wore on her sleeve. Anna was cherished by her family and friends and she is still remembered today for her kindness and compassion.

Kitty Westin at the Anna Westin House

When Anna told me that she intended to go on a diet at age 14 I did not question her motives although I did wonder why. If I had known then that that decision would prove fatal I would have reacted much differently. Fifteen years ago there was little in the way of education or prevention for eating disorders. There were occasional made for TV movies that addressed eating disorders but they mostly suggested that an eating disorder was a choice or a behavior problem. There were few books, organizations, or resources to help patients and/or families understand what an eating disorder is and how to fight one. I don't recall being invited to any educational programs at Anna’s school or in the community and until Anna was diagnosed I know little about eating disorders.

Today, there are many great resources including accurate information that is readily available, and many organizations, books, and websites that are designed to help the sufferer, families and the public better understand eating disorders. There is a large and growing advocacy movement that is fighting eating disorders on multiple levels and the options for treatment have grown and improved.  Research has made significant progress in the understanding of the bio-social-psycho theory of eating disorders and into the most effective ways to prevent and treat them. There has been progress in the fight against eating disorders and I am proud to have played a small role in the improvement we have seen.

Anna Westin House

To date the most meaningful accomplishment of my passion to fight eating disorders is the creation of the first residential treatment program for eating disorders in Minnesota, the Anna Westin House (AWH). I have always said the Anna Westin House is Anna’s legacy. I am incredible proud of the Anna Westin House and I always will be. I know that the house has helped many sufferers thought the years and it has saved many lives. However, Anna’s Law truly is historic. Anna’s law goes beyond the AWH in that it can and will help millions get identified and referred to the treatment they need to fully recover from an eating disorder. Anna’s legacy continues to grow and develop and if I died today I would feel like my mission was accomplished. My mission 15 years ago and remains my mission today is to fight eating disorders through education, prevention and advocacy.

Speaking at 1st Ever M.O.M. March in DC

Fifteen years ago, while planning Anna’s funeral, my husband and I started the Anna Westin Foundation. We had no idea what we were getting ourselves into or how to start and run a foundation. Today, The Anna Westin foundation is The Emily Program Foundation and we continue to work hard achieve our goals. We envision a world without stigma and misconception about eating disorders, and disordered eating. We will be the catalyst in shaping new, informed conversations through advocacy, social outreach, and collaboration with community partners. We are on a mission to save lives, change minds and work to eliminate eating disorders.

Speaking at Congressional Briefing in DC

It is humbling and encouraging and empowering to know that we have a chance to pass legislation that will hit eating disorders where it hurts and bring it to it’s knees. The time is NOW for The Anna Westin Education, Prevention and Training Act of 2015. Anna’s law will save lives. It is to late for many but the time is NOW for millions for people who suffer from eating disorders and for our children who will develop eating disorders in the future. Together we can knock eating disorders down and win the war!

Our Voices and Stories Matter: What Lobby Day Means to Me

by Carmen Cool

The thread that runs through all of the work I’ve done in my life is “advocate”.  It’s who I am and it’s what I do.

I have been to many Lobby Days with the Eating Disorders Coalition (EDC).  When I am there, I bring several distinct perspectives:  I am a recovered person, a psychotherapist who works with eating disorders, a woman whose sister has died from an eating disorder, and an educator who trains young people to do eating disorder prevention work in their schools.

As a feminist therapist, I believe that work has to be done at both the individual and collective level – because eating disorders are not not just a personal problem. In addition to individual work,  I want – no, I need – to do work at the social and policy level so that there are systems in place to support those people I work with.  I still get nervous when I “speak truth to power.”  I still have that voice that whispers (or screams, depending on the day) “who do you think you are?” 

What I learned that very first time was that our Representatives and Senators want to hear from us. They need us, actually. There’s no way that they can know about all the concerns and issues that are out there unless we tell them. Our stories and our voices matter.

It is important to me to use my voice to advocate for my clients. For myself. To support youth in raising their voices and changing the norms that value one body type over another. When I go to DC to lobby, I get the opportunity to take a stand and do all of that.

Carmen (front row, center) with her teen
Body Revolution Advocates

I’ve taken a group of teenagers every time I’ve gone to lobby. This has touched me in so many ways. I love to watch them sit a little taller as they realize they have something to say. I love to listen to their voices shake as they sit in a Senator’s office and then even out as they find their center. And I love to witness their resolve to keep being involved and work for something they believe in.

On top of all that, we get to explore DC! That means Georgetown cupcakes, visits to Monuments and Memorials, late night sharing circles, going the wrong way on the Metro, and jars of hazelnut praline spread from Le Pain Quotidien. But also blisters, giggles when the elevator doors open to reveal cute staffers- all part of what makes our trips fun!  Hearing them say “I have never felt so powerful in my whole life,” after lobbying - that is what keeps me coming back.

To use your voice, be listened to and taken seriously, and the lived experience of knowing that your voice can impact change – that is worth gold. Please join us September 30 and October 1 for the M.O.M. March and the 26th EDC Lobby Day! For more information and registration, visit www.marchagainsted.com.

Who My Daughters Will Become: Reflections on Lobby Day, Advocacy, and Motherhood

Liz and her daughter Genevieve 

by Liz Neaton

Though I had spent several years working in politics in Washington, D.C., the first day I walked into the office of Representative Keith Ellison (D-Minn) for The Eating Disorder Coalition’s (EDC) Lobby Day, I felt like I truly had the ability to make a difference.

I started participating in Lobby Day in 2009. At that time, I never knew just how much it would change me. That year, I heard compelling stories of both recovery and loss with eating disorders.

Loss… that resonated with me.

I had never met anyone who had lost someone to an eating disorder. Here I was, just starting out in my own journey of recovery from the monsters of Anorexia Nervosa and Bulimia Nervosa that had plagued me for the past fourteen years. This was exactly what I needed to hear and it was exactly the moment I needed to hear it.

That first Lobby Day renewed my dedication to recovery. I didn’t want to be another name that was lost to an eating disorder. I didn’t want my parents standing at the podium during a congressional briefing telling my story with tear-filled eyes.

After that year, Lobby Day was like a magnet that sucked me in. Each time, I heard compelling stories of individual trials and tribulations with one common theme: eating disorders lack proper funding, education and access to treatment. A fire was lit underneath me at Lobby Day. I started speaking about my own journey to recovery at high schools, colleges and civic groups. I started contacting my legislative officials on at the local, state and federal level to inform them of the lack of proper funding, education and treatment of eating disorders.

Then, in 2011, I had a daughter of my own – Genevieve. As a single mother, I knew that I needed a safety net if anything should ever happen to me. So, I attempted to get life insurance. I was denied seven times. I’ve kept every denial letter and they all say the same thing: “denial based on history of depression, anxiety and an eating disorder.” Even though I was in a strong recovery program, my past eating disorder was following me. Now it was not just affecting me; it was affecting my daughter. When my daughter was six months old, I brought her with me to Lobby Day. I thought that I should start her advocacy career young. To this day l believe she is the youngest to advocate for the Federal Response to Eliminate Eating Disorders (FREED) Act and eating disorder legislation with the EDC.

Since 2011, I’ve had another daughter. That’s why this upcoming Lobby Day and the March Against Eating Disorders are both so important. 

When I look at my daughters, I see their beauty and potential.

I think about who they will become.

I encourage them and remind them that they can do anything.

Most importantly, I tell them they are beautiful every day. I write it on the mirror so it is the first thing they see in the morning. The last thing I want is for my daughters to endure the struggle I had endured for fourteen years. I want them to love their bodies and realize how perfectly created they are. I don’t have a crystal ball and I can’t say for sure that one of my daughters won’t develop an eating disorder. I can’t say for sure they will love their bodies. In fact, the statistics are against me. But I can show them through my tireless advocacy and, most importantly, by my example that their beauty and worth does not come from anything outside of themselves. Their beauty is from the simple fact that they are alive. They are present and they are able to live their lives. I will continue to come to Lobby Days until we never have to hear the words “eating disorder.” Until no more lives are lost to this terrible disease. Until proper treatment, funding and education are implemented.

I hope you’ll join me in September!

The EDC's youngest advocate joins EDC staff
in the House of Representatives.

Why I Lobby (and Why You Should Too!)

Richmond, Virginia

By: Matt Wetsel

One of the Bills that the Eating Disorders Coalition (EDC) supports is the Federal Response to the Elimination of Eating Disorders, or the FREED Act. Sometimes people see that word ‘eliminate’ and ask us – do you really think that’s possible?  Well, here are the facts: We know recovery is possible. We know many of the warning signs for the onset of eating disorders. We have effective treatment models. So, those make you wonder…

Why, then, are eating disorders on the rise?
Why are people dying from them?
Why is it so hard to get help for an eating disorder?

Unfortunately, it’s complicated. Long before someone seeks help, there are a lot of barriers already in place. These often include:

1) Stigma. Although eating disorders are talked about by the general public more now than even just ten years ago, the average person still lacks significant understanding of the complicated nature of eating disorders, and the seriousness of the diseases.  The lack of understanding remains, in part, because eating disorder sufferers often try to keep their disease secret – those suffering from eating disorders go to many lengths to try and hide or cover up their behavior and try to appear ‘normal.’  It also doesn’t help that, many still view eating disorders as an “illogical problem.”  Despite increased discussion and awareness, it is still difficult for people who haven’t ever been close to someone with an eating disorder to understand how such a disorder develops and takes root, because many people still wonder, “Why would you choose to starve yourself? Why would you chose to throw up your food? Why don’t you just stop binging?”  To many, eating disorders don’t make logical sense.  These uninformed ideas and opinions about a disease that is anything but a choice, are reinforced by…

2) The Media/Pop Culture.  Just this past Thursday, going through the check-out lane I was greeted by a celebrity gossip magazine cover devoted to eating disorders (EDs). The cover consisted of a collage of emaciated models and actresses, along with a list of other celebrities covered in the issue, their various EDs, and the promise of lowest weights and caloric intake in the articles contained within. Anyone see the problems here?  The main problem is the myths purported.  First, they were only covering women.  Second, to have an eating disorder, you do not have to look emaciated.  Binge-eaters and compulsive overeaters typically aren’t underweight, and bulimics often seem to maintain (emphasis on “seem to”) what appears to be a healthy weight due to the way the body responds to purging activities. The magazine’s glamorization of emaciated celebrities misrepresented the breadth and variation of those who suffer eating disorders.  If the extreme portrayals exhibited in the magazine stories are all the general public ever sees or hears on eating disorders, then that makes early detection and prevention harder.  For people in a position to support someone with an ED, this media misrepresentation instills a bias before they even approach the subject, and makes it harder for people to take seriously. Speaking of taking it seriously…

3) Treatment Coverage. A recent Glamour article highlighted the fact that most doctor’s do not know how to diagnose eating disorders, including if the patient is underweight, whether slightly or grossly, or exhibiting signs and symptoms of bulimia or binge eating disorder.  Part of the reason why doctors don’t identify eating disorders in their patients is because they are undertrained in medical school, and they rely on pop culture to judge whether or not a patient has an eating disorder.  All too often patients have heard things like:

-“Well, you’re not that underweight, so you’re not anorexic.”

-“Just don’t let your diet get out of control.”

-“Hey –at least you’re not overweight!”

Unfortunately, appearances can be deceiving, and not even doctors are immune to the thin-is-healthy bias. This is further compounded by the lack of research done on eating disorders. To date, there have been no comprehensive, nationally representative studies on eating disorder prevalence. There is endless debate about the ‘cause’ of eating disorders, and almost as much debate about the best way to treat them.

Looking at what we’re up against, it’s pretty easy to feel discouraged. The good news is, there are already members of Congress, the individual advocates and the Member Organizations of the EDC and other organizations working to address these problems.

For starters, the EDC has partnered with Mothers Against Eating Disorders and The Alliance for Eating Disorder Awareness to put on the biggest event in EDC National Lobby Day (Lobby Day) history yet! On September 30, 2014 the Mothers and Other’s March (M.O.M.) Against ED will take place in Washington, DC. The day will conclude with the world premiere of America the Beautiful 3 (ATB3) and the filmmaker himself, Darryl Roberts.  The ATB film series has shed light on the many ways that the beauty industry contributes to the unhealthy relationships that so many people suffer with their body, and we’re thrilled to have him join us!

October 1, 2014 will see the EDC’s 26^th Lobby Day on Capitol Hill. We’re excited to continue advocating and gathering support for the FREED Act.  And, we’ll also be introducing new legislative initiatives around the Body Mass Index (BMI). 

So how can you get involved? For starters, join us for Lobby Day and the M.O.M March! Full details and registration can be found here:

http://www.marchagainsted.com/

Showing up in numbers on Capitol Hill, sharing our voices and collective message with Members of Congress and their really amazing staffers is ultimately the best way for us to advocate together and make change, but… If you can’t make it to DC for Lobby Day and the M.O.M. March but you still want to be a part of history, stay tuned to the EDC’s FB, Twitter and blog for how you can make a difference even if you’re not on the Hill with us that day. 

Whether in DC or supporting from a distance, we hope you’re as excited as we are about the upcoming events and Lobby Day efforts. It’s a chance to make a difference for millions of people and continue to advance a cause we all care so much about. That’s why I’ve been involved for the past seven years, and why I keep coming back. So please, join us however you’re able. See you soon!

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What's Lobby Day? -- Reflections From a First-Time Advocate

 

 “Wear comfortable shoes.”

In April of 2014, I showed up for my first Lobby Day experience with the Eating Disorder Coalition excited, but not knowing quite what to expect.  Sure, the Coalition had sent us first-timers a precursory email saying, "Here's what to expect at Lobby Day…make sure you wear comfortable shoes!" but until you're smack in the midst of Lobby Day and you start realizing that the phrase “next building” means something very different on the vastness of Capitol Hill, you don’t appreciate what amazing advice that is. 

The last time I was in Washington, DC was during high school when I attended a summer debate camp.  I know.  I was super cool.  While most boys growing up a few blocks from Wrigley Field in Chicago might have dreams of playing baseball, my dreams were about reading memos, writing policy briefs and wearing power suits.  So I was definitely predisposed to at least finding lobby day interesting.  (Also I had just finished watching both seasons of House of Cards, so was having delusions of political grandeur that led me to determine I was not above a little blackmail or something if it came down to it because, you know, that’s how much I care.)

I’ve had the humbling privilege of working with people suffering from eating disorders for most of my career, including developing programs and providing education to families, professionals, and the community at large.  I’m very familiar with the frustration of trying to convey the understanding of eating disorders as disorders of pain, loneliness and shame, which we know they are, and not disorders of vanity or self-obsession, which we know they are not.  Even though I know there are a myriad of very complicated factors responsible for the development of eating disorders, I’ve also seen the very real damage to self-esteem that can occur via societally sanctioned messages about weight and size and the way that these messages can be propagated as well as created by the media.  These messages may not cause eating disorders per se, but they don’t help and they are harmful in other very real ways.  So I was eager to learn about the proposed bill and to experience the process of how lobbying works.

The training day started with meeting my cohort of fellow activists.  I cannot convey how moving and humbling it was to hear everyone’s stories and their reasons for being there.  From those who have lost someone close to them to this terrible illness, those who have themselves suffered, those who were there because they were passionate about educating others about the issues, to those of us who work with people suffering from eating disorders, it was evident how deeply committed everyone was.  Everyone understood the seriousness and impact of eating disorders, but more striking to me was that there was not a sense of hopelessness despite how difficult eating disorders can be to experience and to treat.  Everyone was there to DO something, not by using position or access or money, but by the profound and simple virtue of being a constituent and a citizen and taking the time to show up and “make the ask.”

It was this last piece that was a surprise and a revelation to me, namely the reminder that we have the responsibility and the power to use our voices, as individuals and as a group, to let our senators and representatives know the issues about which we care, and to demonstrate that care not by threats, invectives or game-playing, but rather by embodying this care by speaking with integrity and passion.  Even if there is a member who might not agree with you or who might not be willing to join you by supporting a particular measure, I have to believe that simply showing up and representing the millions of people affected by eating disorders made a difference.  Maybe our efforts help a staffer open her or his eyes to the impact of eating disorders, or someone who has known a friend or family member who struggled who appreciates that someone else cares as much as they do, or even someone who is her- or him-self struggling and hasn’t been able to acknowledge it.  Having people who have experienced it and their families, friends, and professionals come talk to them about the importance of these issues can make a sea change in others’ attitudes and understanding about eating disorders.     

As someone who often feels like I am spending most of my time vacillating between preaching to the choir or to the proverbial brick wall, I found myself leaving my first Lobby Day with a sense of renewed hope and a reminder of why we all do what we do. And I left reminded that when you’re trying to change a lot of people’s minds by knocking on a lot of people’s doors, you have got to be patient.  I was reminded that one voice matters, as does one willing ear.  And perhaps most importantly, I was reminded that the efforts of a few impassioned people can have a disproportionate impact, which is why I’m so grateful to be able to join the Eating Disorder Coalition again at their fall Lobby Day.  I’ll be the one wearing super comfortable shoes. 

Norman H. Kim, Ph.D.

National Director

Reasons Eating Disorder Center