Wednesday, July 21, 2010

Why I come to EDC lobby days every year: We need you to come too!

By Gail Schoenbach, EDC Advocate and Board Member
from New Jersey

I was bulimic for 23 years. I started treatment at 40 years old. I came home after a 6 week inpatient stay on my 41st birthday and 2 weeks later decided to go to Washington DC and lobby for the passage of mental health parity with the Eating Disorders Coalition. I really had no idea what that meant, but what I did know was that with treatment, I was recovering. Members of Congress and insurance companies needed to hear this and I wanted them to make sure that other people suffering from eating disorders would have access to the treatment they needed.
Lobbying with the EDC, meeting the wonderful people that are all part of this organization and informing Members of Congress about eating disorders continues to amaze and impress me. I remember that first time I went to lobby day thinking that I didn’t even know people could enter these historic buildings and go to the offices of our legislators, and actually meet them in person on occasion. It was at that point, that I began to comprehend exactly what we were doing and that we were being heard and helping to influence decisions that ultimately could make changes.
The first time I went lobbying was most amazing, since I had no idea whatsoever what it meant to go and lobby. Not being particularly politically knowledgeable, I went into really clueless. It was two weeks after I got out of inpatient treatment and my husband came with me to DC. As I recall, it was the second lobby event for the EDC. The night before the lobby day was a reception where we were introduced to so many people and big time legislators were honored at the event that night. Hillary Clinton was there and Paul Wellstone, and it was quite a thrill for me to be a part of the beginning of helping to introduce mental health parity. I had a story to tell and experience with insurance company issues and the next day at lobby training, I started to learn how the lobbying procedure works and how my part would fit in.
It was very exciting, a little scary and intimidating but the experience was so good for me and really allowed me to speak out for myself and the cause. I was hooked and knew this would be the first of many more for me. I have been lobbying for 8 years now.
Each time after that first experience, I gained more confident and got more and more familiar with the ins and outs of what you do when you lobby; making appointments, meeting with legislative aides and sometimes the legislator themselves. At the end of the day, I always get such a feeling of excitement and purpose.

I developed a relationship with one of the representatives from my district in NJ, and on several occasions I met with him in my home town as well as in DC when we lobbyied. He was very supportive of the EDC and when the FREED Act first came on the scene, he had agreed to be one of our lead sponsors of the bill.

That particular lobby day when the Congressman agreed he would sponsor the FREED Act for us was so exciting as I experienced first hand how those relationships and persistence with the offices can really pay off. Like anything else, I have learned it is often timing and luck, but then I remember that these people would not know about any of this, if we didn’t show up to tell them about it. That’s how they learn about eating disorders and the need for federal policy, when we tell them about it.
The Eating Disorders Coalition has given eating disorders and everyone affected by them in some way, purpose, meaning and hope. I know how to use my voice now. Every single person who has suffered has something important to say and that the words do get heard. The results from lobbying can take awhile to happen, but the process is rewarding, just like recovery.
This experience continues to amaze me. I get something new from it every time I go to Washington. Every time I meet someone new, every time I talk to someone, every time I continue to be a part of this group and movement that is making a difference gives my eating disorder’s history value and meaning. Sharing my recovery and telling the representatives of our government what we need them to do benefits everyone. Our information is invaluable and we have to be the ones that tell them, so they can make the changes that we need.

I invite you to join us on our next lobby day September 29th and 30th. We need your voice and you will love it!

Wednesday, July 14, 2010

Updated and TIME SENSITIVE Action Alert! Ask Michelle Obama to address eating disorders!

On Tuesday, July 13, 2010, in a video chat about the Let’s Move Campaign, the First Lady said, “The flip side to obesity can be eating disorders and we certainly don't want to enforce the reverse trend." ~~ We ARE making an impact --as evidenced by her language yesterday-- but we have more work to do to ensure the Let's Move Campaign properly addresses eating and body image disorders. We believe that including information on eating disorders in public statements, tools and guides for the Let’s Move Campaign would strengthen the First Lady’s mission to support and improve child health. Here's how you can help make that happen:

The Eating Disorders Coalition (EDC) is working with Congressman Alcee Hastings, who is asking Michelle Obama to expand her Childhood Obesity Initiative so that it also addresses eating disorders. Congressman Hastings has written the below letter to the First Lady. We are looking for additional Members of Congress to join them in taking a stand for eating disorders by signing onto this letter.

This is where you come in!

We ask that you call your Representative in the House and ask her/him to sign onto this letter. This is important. We have an opportunity to influence Michelle Obama's initiative so that it is more comprehensive and addresses the spectrum of eating disorders as well as obesity.

If you do one thing today - have it be this. Contact your Representative now.

Here's how:

1) Who is my Representative? If you don't know who your representative is

- go to

- put your 9 digit zip code into the box in upper left corner

- This will take you to your Representative

2) Calling your Rep

- Call 202-224-3121 which is the Capitol Switchboard and ask for your Rep's office. They will connect you

3) The MESSAGE (what you say when calling) ---

Tell the person answering that you are a constituent and that you would like him/her to sign onto Alcee Hastings letter that urges Michelle Obama to incorporate eating disorders into her childhood obesity campaign. The deadline for signing onto the letter is NOON ON FRIDAY, July 16th.

The receptionist may transfer you to the health legislative assistant who is in charge of this issue. You then repeat your message. You can also get this person's email address and send the letter below...

If you need more message: Everyday people are dying of eating disorders yet this reality remains unrecognized and hidden. When there is such a focus on weight as is the case in the First Lady's initiative - this invariably results in some people using risky weight loss methods, the increase of weight-related stigma and bullying, and developing eating disorders. Unless Michelle Obama overtly includes a discussion of eating disorders in her efforts there is the unintended possibility that her campaign will do harm. If your boss adds his/her name to this letter it will help influence the First Lady's Initiative so that it is comprehensive and promotes health for all children.

If the office wants to sign on to this letter, they should contact Amye Greene at 5-1313 or --- This is for Members of Congress and their staff ONLY - please do not contact Amye as an advocate.

Below is what you would send in an email if the person you speak with would like further information. Please cc: "":



Deadline: Friday, July 16 at NOON

Signees: Reps. Arcuri, Baldwin, Capps, Courtney, Deutch, Edwards (MD), Ellison, Frank, Grijalva, Hodes, Kennedy, Kilpatrick, Meek (FL), Napolitano, Maloney, Pascrell, Towns, Price (NC), Shea-Porter, Schwartz, and Wasserman Schultz

This letter is supported by the following organizations (28): American Academy of Child and Adolescent Psychiatry, Academy for Eating Disorders, A Chance to Heal, American Dance Therapy Association, American Group Psychotherapy Association, Anxiety Disorders Association of America, Avalon Hills Residential Eating Disorder Programs, Binge Eating Disorders Association, Cedar Associates, Center for Eating Disorders at Sheppard Pratt, Clinical Social Work Association, Eating Disorders Coalition,, The Emily Program, F.E.A.S.T., Gail R. Schoenbach FREED Foundation, Gurze Books, Maudsley Parents, Mental Health America, MentorCONNECT, Monte Nido Treatment Center, Multi-Services Eating Disorder Association, National Association of Anorexia Nervosa and Associated Eating Disorders, National Eating Disorders Association, Pennsylvania Education Network for Eating Disorders, Renfrew Center, School Social Work Association of America, and The Emily Program Foundation

July 14, 2010

Dear Colleague,

In February, First Lady Michelle Obama introduced the Let’s Move Campaign, and took a historic step in combating childhood obesity and improving the health of families and communities.

Like obesity, unhealthy weight loss measures, anorexia nervosa, bulimia nervosa, binge eating and eating disorders not otherwise specified (EDNOS) have increased significantly over the past few decades. Although obesity and eating disorders have distinct health impacts, they both have negatively impacted the physical, emotional and educational development of children. Many obese individuals also resort to unhealthy weight loss tactics and may develop eating disorders in an attempt to achieve a desired weight or body image.

In a recent video chat about the Let’s Move Campaign, the First Lady said, “The flip side to obesity can be eating disorders and we certainly don't want to enforce the reverse trend." Although we are pleased that she mentioned eating disorders, we believe that including information on eating disorders in public statements, tools and guides for the Let’s Move Campaign would strengthen the First Lady’s mission to support and improve child health.

The prevalence of obesity and eating disorders indicates the need for a comprehensive and well-coordinated intervention that supports healthier eating habits and improves the mental and physical health of all children. Please join me in sending a letter to the First Lady urging her to take a more holistic approach to addressing behaviors that are compromising the health of our children. If you have any questions or wish to sign on to this letter, contact Amye Greene at 5-1313 or


                  Alcee L. Hastings
                  Member of Congress


July 21, 2010

The First Lady of the United States
The White House
441 G Street, NW
Washington, DC 20500

Dear First Lady Michelle Obama,

Thank you for championing the health and welfare of our nation’s children through the Let’s Move Campaign. Let’s Move has brought historic attention to the importance of addressing one the most serious public health concerns of today. Although we applaud that you mentioned eating disorders during a recent Let’s Move event, we believe that broadening Let’s Move’s focus to include information about eating disorders would enhance the campaign’s mission to improve the mental and physical health of all children.

We understand that obesity and eating disorders have distinct health impacts, and believe that the prevalence of these disorders indicates the need for comprehensive and well-coordinated interventions that support healthier habits and environments. Like obesity, unhealthy weight loss measures, anorexia nervosa, bulimia nervosa, binge eating and eating disorders not otherwise specified (EDNOS) have increased significantly over the past few decades. In fact, more than 11 million men, women and children suffer from an eating disorder in the United States.

In a speech that publicly introduced the Let’s Move Campaign, you stated that unhealthy diets and habits can negatively influence physical, emotional and educational development and well-being. Eating disorders are no exception. The Centers for Disease Control and Prevention (CDC) found that undernourishment impacts a student’s ability to excel academically, and suicide, anxiety and depression are more common in people with eating disorders. Eating disorders also have the highest mortality rate of all mental illnesses, and can result in long-term health issues including heart and kidney failure, cognitive impairment, muscle atrophy and sudden death.

Like obesity, eating disorders afflict children of different ages, genders, economic backgrounds, and ethnicities. At least 30-40 percent of junior high students have reported dieting, over half of high-school girls have reported dieting, and 25 percent of bulimia and anorexia cases are men. What’s more, student athletes can be especially vulnerable to eating disorders because some adopt unhealthy dietary restrictions and weight loss methods to achieve or maintain a certain weight for competition. Many obese individuals resort to unhealthy weight loss tactics and may develop eating disorders in an attempt to achieve a desired weight or body image.

Strong environmental, cultural, social factors have contributed to the high rates of obesity and eating disorders in the United States. Stigma, blame and misinformation often accompany these conditions. Coordinated efforts among educators, elected officials, parents, community leaders and young people are crucial to executing sustainable solutions to these public health problems. We believe that the Let’s Move Campaign’s mission is compatible with messages and interventions that are designed to address eating disorders.

Educators could incorporate information about unhealthy dieting when providing information about healthy food choices. Speeches and parental toolkits could include information about risks, signs and support networks for eating disorders. Let’s Move programs could be designed to teach children to respect body size diversity, promote self esteem, and support body satisfaction. And, the Let’s Move Web site could include a link to the Office of Women’s Health Web site which has comprehensive and evidence based information on eating disorders.

The unprecedented leadership in the battle against obesity through the Let’s Move Campaign shows your commitment to creatively and aggressively improving the health of children, families and communities. We hope that you will take our suggestions into consideration so that the Let’s Move Campaign can take a more holistic approach to addressing the full spectrum of behaviors that are compromising the health of America’s children.


Alcee L. Hastings
Member of Congress


Please email once you have made your phone calls to report who you called.

Thank you for adding your voice to this effort. Every call makes a difference!

Tuesday, July 13, 2010

We are having an impact! Michelle Obama talks about eating disorders and health

Quotes from Michelle Obama in a CBS News report

"The flip side to obesity can be eating disorders and we certainly don't want to enforce the reverse trend," she said. "The campaign 'Let's Move' is not about how our kids look. It's really about how our kids feel and our health."

She advised parents not to talk specifically about weight loss, but rather to make their focus "an overall health picture."

Read the story at

The many advocates who care about eating disorders, weight-related stigma, and health at every size have had an impact - as we see from this shift in the First Lady's message. Way to go! Keep speaking up!

Jeanine Cogan, Policy Director

Wednesday, July 7, 2010

EDC LOBBY DAY, SEPTEMBER 2010 SAVE THE DATE Special Airfare Offer Ends July 8th.

Special Airfare Offer Ends July 8th.

The Eating Disorders Coalition is hosting its second Lobby Day and Congressional Briefing of 2010 on September 29th and 30th. We would love if you could come join us as we Lobby the Hill in support of the FREED Act. Below you will find a link to special offers from Southwest Airlines on airfare if you book before July 8th* as well as the Lobby Day Schedule.

*The EDC does not directly endorse Southwest Airlines. We are providing this link as a courtesy to those interested in attending Lobby Day in September.

Wednesday, September 29th

Basic Training
2:30PM - 4:30 PM

Basic Training is required for all first-time advocates. You will learn what lobbying is, how to do it effectively, and the role of advocates in creating sound public policy. If you have participated in a previous EDC Lobby Day, this session is optional.

We invite you to our EDC Reception honoring Congressman Kennedy after EDC Lobby Day Basic Training. There is no fee to attend the reception but please register all guests who plan to attend.

Reception Honoring Congressman Kennedy
6:30-8 PM

Rayburn House Office Building

Independence Avenue and South Capitol Street

Gold Room 2168

Washington DC 20003

Thursday, September 30th

Message Training
9-11 AM

St. Mark's Episcopal Church, Parish Hall
3rd & A St SE, Washington DC 20003

Message Training is REQUIRED for everyone joining us at EDC Lobby Day. We will review talking points for the day and our overall message with other EDC Lobby Day team members. A light breakfast will be served prior to Message Training.

EDC Lobby Day
11:30 AM - 3:30 PM
U.S. Capitol Complex

Congressional Briefing

Tentative to be Scheduled 4-5pm

Registration for Lobby Day will be open soon. We hope you can join us!

Why I Come to the EDC Lobby Day Every Year

...By Eileen Binckley

I suffered from a life-long eating disorder that began at the age of 13 and culminated at the age of 52, when I was finally diagnosed and obtained treatment. That treatment was extensive and at times intense, but I have now been recovered for 12 years. Every day since then I count my blessings that I was able to get the treatment I so desperately needed, knowing all too well that there are so many that have been unable and continue to be unable to do so.

For this reason, I got involved with the EDC and have attended every Lobby Day for seven years. Educating legislators about eating disorders and asking for their support has provided me with a voice in helping to forward the cause of eating disorder legislation. I may be a Lobby Day veteran, but this is one activity that never gets old. Being in the presence of other sufferers and/or their family members for a common cause has been therapeutic and life-confirming. Our patience and persistence over the years has ultimately had positive results, leaving us with a true sense of empowerment.

I urge you to join us this September. You can be empowered too.

Tuesday, July 6, 2010

Obama Administration launches

Today the Obama Administration launched, a new website to help families and employers take control of their health care.

The website will allow you to take health care into your own hands, with information about insurance choices and your new rights under the new Affordable Care Act.

The new website also has tools to help you explore your coverage options, with additional information if you are a parent, a senior on Medicare, a young adult, a person with a disability, or an employer.

By answering a few easy questions, the website will present you with all the coverage options available to you. You can then learn more about each option, including comparing the health insurance plans and benefits available in your community.

To visit the website, go to As always, please continue to keep me informed about issues of concern to you and your family.


Debbie Stabenow

United States Senator