Archive for Advocacy

Supporting The Emily Program Foundation

Our Community Educator Shares her Experience with Our Work, and Why Your Support Matters.
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Caring is the first step to making a difference in our area of work!

Why I Care

Advocating for mental health and promoting positive body image has always been important to me. Before I even considered starting my year of service with the Foundation, I researched unrealistic beauty standards and their influences on how we see people, including ourselves. At work I talk about harmful expectations of our bodies nearly every day, and my growing understanding of the mind-body connection is that it’s interrelated. One affects the other for better or worse. I’ve known this fact for a long time, and now I’m educating others about eating disorders, a mental illness that directly impacts both.

Having learned so much as a Community Educator for the Foundation, I’ve been hyper-aware of how people around me talk about their bodies. I find it empowering when friends open up to me about their own experiences; one because they trust me, and two because sharing stories related to mental illness helps reduce stigma. Hearing stories from strangers elicits further recognition that as a society we have an unhealthy relationship with food and our bodies. One of these conversations particularly stands out:

While at a community event, a group of adolescents came up to talk with me. The oldest explained the difficulty of accepting her body’s shape. She told me she would skip meals and constantly exercise. She said her siblings teased her because she wasn’t as thin as them. She couldn’t have been older than 14.

Listening to her struggles evoked two emotions: sadness for what this smart, lovely young girl of color was going through, and gratitude that she chose to share that with me.

Now be honest, were you initially picturing a white girl? She was also wearing a hijab. Does that change your perception of eating disorders? I ask because oftentimes we overlook the fact that eating disorders affect anyone of any age, race, gender, socioeconomic background, and religion.

Eating disorders are prevalent, and they affect two things we live with every day: our minds and our bodies. Caring about mental health means encouraging self-care in others and supporting organizations such as The Emily Program Foundation that enable individuals to do so.

Why Your Support Matters

Half of all people know someone with an eating disorder.

-National Eating Disorder Association

The story I shared above is not an isolated experience. Reports from the National Eating Disorder Association show eating disorders affect at least 70 million individuals worldwide. Almost half of those people are American, including 200,000 Minnesotans. In a MN student survey, we learned that at least 11% of MN high school students have been diagnosed with an eating disorder, and 52% of adolescent girls along with 23% of adolescent boys experience disordered eating in Minnesota. And eating disorders don’t just affect our children. The fastest growing segment of the population being diagnosed with eating disorders is middle-aged women, and 30% of men in the U.S. have an eating disorder. I could go on about the statistics of individuals being directly impacted by eating disorders, but above all, what summons your support is the fact that half of all people know someone experiencing disordered eating. It’s also important to remember that people suffering from eating disorders oftentimes cannot get better without the support of others. In other words, we are all in this together.

 

 

 

 

Written by Liz Parroquin

 

 

Experiencing Advocacy Day in 2017

By Caroline Kinskey

edc carolineI traveled alone for the first time to attend EDC Advocacy Day in Washington D.C.  I was nervous to be flying and traveling alone, but also excited and incredibly grateful that The Emily Program Foundation provided me with this opportunity to advocate for those suffering with eating disorders.

After breakfast and chatting with other advocates on Capitol Hill, Amy Klobuchar gave the opening address. She was inspiring, and I am proud to live in a state that has a senator who passionately advocates for the eating disorders community. Message training followed, which informed the advocates of the goals for the day, approach strategies in telling our personal stories, and knowing what we need of the people of Congress. Specifically, we need Congress to recognize National Eating Disorder Awareness Week and urge the CDC to re-include eating disorder surveillance questions in national surveillance surveys. The team from Minnesota met with five congressional staffers. The staffers were very receptive, and it was evident that our meetings and personal stories made a difference. EDC Advocacy Days have made a marked impact in the past, and they continue to influence policy on Capitol Hill regarding eating disorders. Although there has been change, our work is not done.

Through this experience, I realized how fortunate I am to live in a country where your voice matters and is caroline edcinfluential.

When enough people speak up, change can happen at a federal level.

It was inspiring to hear people who have recovered from their eating disorders tell their personal stories and pay it forward by advocating for others still struggling. As a graduate student in clinical psychology who wants to work with individuals with eating disorders, contribute to the research, and continue to be an advocate, this experience was invaluable.

Eating Disorders Coalition Advocacy Day 2017

On April 5th, 2017 The Emily Program Foundation and scholarship recipients traveled to Washington D.C. for the Eating Disorders Coalition’s National Advocacy Day. Below are the reflections of our award recipients from their first experiences on The Hill.

Award Recipient Jamie Margetta:

This past week I was given the privilege to attend the Eating Disorders Coalition Day on the Hill. I was graciously awarded a scholarship from the Emily Program Foundation to fund my travels to Washington, D.C. to advocate alongside EDC members who are as passionate as I am about eating disorder advocacy. I expected to walk away with a new experience and a sense of accomplishment from advocating, but I ended up walking away with so much more. My experience at EDC’s Advocacy Day was eye opening, exciting, educating, and overall an experience I won’t soon forget. I was given the Jamie, Jillian and Molly opportunity to meet with House and Senate representatives and express my passion to eating disorder research, early intervention, and education. It was very empowering to be able to express not only my passion on this subject, but why others should care. Presenting fact sheets, personal stories, and evidence that eating disorders matter and they need help was very gratifying. I am so thankful the Emily Program Foundation gave me the opportunity to travel to Washington, D.C. and truly express my concerns and needs for the eating disorder community. I met the most amazing group of people and learned so much from the advocates. This is definitely an experience I will not forget, and I am so grateful I was able to advocate on behalf of friends, family, and loved ones who have experienced the challenges of an eating disorder. Your voice matters!

 

Award Recipient Molly Britt:

As a university undergrad, I did not believe that I could make a difference in the political world without any experience. My experience at the 2017 EDC Advocacy Day completely changed my view of that. While working alongside women and men of all ages, I got to meet with congressional staffers and spread the word about the importance of eating disorders and how the political Molly Britt and Emilyworld could help. It was the first Advocacy Day since the passing of the 21st Century Cures Act which was the first time in history that specific language regarding eating disorders was written into policy. Our mission was to prompt the members of congress to put this policy into action. I was overwhelmed by the support that so many of these staffers conveyed toward our cause and felt as though I was really making a difference. To top of the great day, I got to hear Amy Klobuchar – one of Minnesota’s senators and a driving force for eating disorder policy – speak and thank us for all our hard work. This day has motivated me to participate more in policy change surrounding eating disorders and all other mental health causes.

History Has Been Made

Guest Blog Post by Kitty Westin

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I was thrown onto an uncharted path nearly 17 years ago. I was in excruciating pain, I was lost and confused and had no idea how to navigate the path, where the journey was headed or what I was supposed to do along the way. When Anna died from an eating disorder on February 17, 2000 I felt like my world had blown apart. I did not know how to survive the tragedy but I did know one thing; I had to somehow transform the horror of Anna’s death into something positive. I reached out to Senator Paul Wellstone who was a champion of mental health parity and asked for his help. I told him Anna’s story and he told me to take the story to Washington D.C. He said that I should bring as many other voices with me as possible because that is what would make change happen. My journey has been hard, frustrating, messy, and often filled with obstacles, but it was always a journey of love.

Once I figured out that the journey was headed towards Washington D.C. it did not take long for others to join me on the path. People from across the United States stepped up and were willing to use their voices and tell their stories to Members of Congress. Soon we had a movement that included thousands of people who were committed to a common goal, which was to pass meaningful Federal legislation to address eating disorders.

In 2014 we introduced the Anna Westin Act and our advocates began the hard work of meeting with their representatives, making phone calls and sending letters, emails, tweets and posting on Facebook to drum up support. As the 114th Congress was nearing the end we heard that our efforts were successful and language from the Anna Westin Act was included in a bill called the 21st Century Cures Act. The Cures Act is a bipartisan bill and both the House and the Senate were motivated to get it passed before Congress adjourned in December. The House of Representatives passed the Cures Act with Anna Westin Act language included on Nov. 29 with an overwhelming majority, 392- 26. The bill was brought to the floor of the Senate on Dec. 7 and I along with fellow advocates watched as the Senators filed in one-by-one and voted. The bill won with an overwhelming majority of 94 – 5. On Tuesday, Dec. 13, President Obama will sign the bill and it will become law! After nearly 17 years of work we passed eating disorders specific legislation. We made history and the efforts of our advocates will help millions of people by providing training for medical professionals and clarifying that mental health parity applies to all levels of treatment including residential.

It is hard to describe how it felt to be sitting in the gallery of the Senate to witness this historic moment. I was elated and relieved. I felt immensely grateful to our grassroots advocates and our champions in the Senate and the House who worked tirelessly to get this done. And, I felt calm, like a weight was being lifted from my shoulders. I willingly took on the burden of getting this done and I was never alone on the journey. There were always people who helped carry the load but I always felt that it was my responsibility to be Anna’s voice and to get this initiative to the finish line. However, I and my fellow advocates could only take it so far, we had to have Members of the Senate and the House take it across the finish line. Senator Amy Klobuchar stepped up and assured us that she would do everything in her power to pass the Anna Westin Act and that is exactly what she did. She asked three women Senators to help; Senator Tammy Baldwin (D-WI), Senator Kelly Ayotte (R-NH), and Senator Shelly Capito (R-WV) and they worked as a team to get this done. I am proud of our Minnesota Congressional Delegation who joined forces nearly unanimously including Sen. Al Franken [D-MN], Rep. Erik Paulsen [R-MN-3], Rep. Keith Ellison [D-MN-5], Rep. Collin Peterson [D-MN-7], Rep. Tom Emmer [R-MN-6], Rep. Richard Nolan [D-MN-8], Rep. Timothy Walz [D- MN-1] and Rep. Betty McCollum [D-MN-4] to help millions of people who are affected by eating disorders.

Passing language from the Anna Westin Act was truly a team effort. It proves that having passion and commitment and never, ever giving up can lead to success. Our work is not done, there are other issues that we need to address related to eating disorders but let’s all take a moment to bask in this victory! Anna wrote the following words in her journal just days before she died; “May your dreaming never end and your voice never die”. Thank you for daring to dream and using your voice. Together we made history!

 

 

 

Eating Disorders Coalition Roundtable at the White House

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by Kitty Westin, eating disorder activist

It felt like I was in a dream this week when I was standing in line for security clearance to get into the White House for a meeting with top level White House staff, key government agencies, and eating disorders leaders from across the United States. I wondered if I would wake up and realize that I was having a really good dream. I didn’t wake up, it was real! It was a dream come true!

When I started advocating for attention to eating disorders at the national public policy level 16 years ago I often dreamed that someday our national leaders would pay attention and address the many issues that people affected by eating disorders face. I dreamed of a time when health care professionals, school personnel, and the general public would understand that eating disorders are serious, and sometimes, life threatening illness. I dreamed of the day when insurance companies would routinely APPROVE treatment for eating disorders at all levels of care. On Wednesday, September 14, 2016 I felt like I was living my dream!

The Eating Disorders Coalition for Research, Policy & Action (EDC), our Washington DC based advocacy organization, was invited by White House staff to convene a roundtable discussion on eating disorders. For the first time in history, eating disorders caught the attention of the Executive Branch of the United States government. It was an amazing day!

The EDC pulled together nationally known leaders in the areas of training, treatment and research of eating disorders. The White House invited representatives from several agencies including; Center for Consumer Information and Insurance Oversight, Office of Women’s Health, Department of Health and Human Services, SAMHSA, and NIMH. We discussed issues around mental health parity, early identification for school personnel and health professionals, and research needs as it relates to eating disorders. The end result included key follow-ups from the eating disorders community around all three areas. Overall, the conversations were very productive in all three areas, especially around the parity discussion. The White House and the agencies were extremely engaged and communicated how much they would like to have follow-ups and continue these discussions.

We are making amazing progress thanks to our advocates, our leaders, and our champions on the Hill! My dream of a world where eating disorders are no longer ignored, are no longer misunderstood and people with eating disorders (and all mental health issues) are able to get the care they need is in sight.

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