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
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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!

#WhyWeWalk Best Moments

#WhyWeWalk best moments: A Recap of the 4th Annual Celebrating EveryBODY: A Walk for Eating Disorders Awareness


There are so many "best moments" to share with you from this past weekend's 4th Annual Celebrating EveryBODY walk. Some of them include: watching a brave young woman share about her first 365 days of recovery in front of the walk-audience, which included a group of her friends and the teacher who helped the young woman recognize she needed help; seeing women and men of all ages, shapes and sizes come together to raise awareness; watching volunteers work their patooties off to make the event crazy-successful and without a hitch; witnessing the rain hold off until THE very moment the first walkers completed the course (#miraculous!!); hanging out with +EDCoalition1 advocates in sunny Florida!; finally meeting friends in person who for years I've only known via FB; receiving hugs of gratitude and hearing people say, "Thank you for saying what you said about "it's a given I am beautiful, because I am alive."; and so many other moments that I will not soon forget.

But by far the best moment I recall from the walk is when I had the huge honor of surprising Johanna Kandel by asking her to come forward on the stage so that the audience could share their gratitude with her, and the all those from the Alliance for Eating Disorders Awareness​ who helped make the walk possible.  IMMEDIATELY upon asking Johanna to come forward, nearly 800 people rose to their feet and resounding applause echoed throughout the park, for a good few minutes.  I was in tears watching such an incredible woman receive such a beautiful tribute. 

Johanna and her team of Alliance volunteers deserved every single ounce of the love and gratitude that poured forth in that applause and standing ovation.  One of the reasons Johanna has helped so many is because she has an unwavering dedication to ensure that no one will suffer without resources in the way she did back when she suffered an eating disorder.  Her work-ethic and compassion are beyond incredible and I wish I had even one ounce of her energy and ability to make it all look so easy.  The fact is, what Johanna and all the crew at the Alliance do day after day is not easy.  It is hard work --emotionally, physically, mentally, financially, etc.  But it is also necessary work and I am so inspired by the way Johanna and the Alliance team have charged themselves with their mission.  I was so humbled by Johanna this weekend, yet again --humbled to do more, to work harder, to never ever stop doing my small part of all that needs to be done to help ensure that one day: eating disorders will NO longer be the deadliest of all mental illnesses! #thetimeisnow

The Alliance walk was by far and without a doubt, the most incredible walk for eating disorders awareness that I have ever attended. I hope to have the privilege of attending for many many more years to come and I encourage you to consider being a part of the walk, too.

Our work continues... ~Kathleen

For more pictures, please visit the EDC's FB page: https://www.facebook.com/EatingDisordersCoalition/photos_stream

A Mom Shares About Lobby Day

August 18, 2014
"Lobby Mommy!!"
By Faith Yesner

 

It was April of 2009, seven months after my daughter was diagnosed with anorexia, when I first stepped out of my life of "politically ignorant bliss" and onto Capitol Hill as a lobbyist for the Eating Disorders Coalition (EDC). Before that day, I didn't know what a lobbyist actually did!!  In fact, until I actually lobbied...until I took my first step into the office of my Representative (heart pounding, hands shaking), I never imagined how empowering and satisfying lobbying would be! Of course, before that day, I had no reason to get “all political" or even marginally involved in what I just didn't "get." I was your middle class mom of 2 easy going kids, one in college and one in HS, focused on college apps and auditioning for my finally flourishing acting career!

Life came to a screeching halt with the anorexia diagnosis, and devastation ensued for our family. I was barely functional from shock, fear and depression. I was full of rage at what this disease was doing to my family and more so, to my beautiful daughter. In addition to that, I had to battle insurance for coverage even when it was medically necessary and urgent, and advocate constantly to keep my daughter from falling through many treatment cracks. As I educated myself about eating disorders, treatment protocols, lack of fair and necessary insurance coverage, and lack of educational programs and info about this deadly disease, it was evident that the system was terribly flawed.   It was also evident that many battling eating disorders were, in fact, falling through the cracks and suffering terrible consequences.

Now I had a reason to become "all political"!!

When the opportunity arose for me to use my tired, angry, frustrated, heartbroken voice in a concrete way that could promote change, I jumped...onto a train from Philadelphia to the Hill (Capitol Hill), alone and nervous, to my first EDC Lobby day!!! Even as an actress with no fear of public speaking, I was scared!! This was the unknown, but considering what I had to face when the once unknown anorexia reared its ugly head, this was a piece of cake.

We had a training session the morning of lobby day and rehearsed what we were going to say to our Members of Congress and their staff. A team leader organized it all and anchored the team, so we never felt alone. Once we hit the Hill and headed towards our arranged meetings, the excitement grew! As we met our Representatives and Senators, I began to see just how powerful a Mom's voice can be. When a mom speaks, they listen...intently. Because they are human too. Because most have suffered some heartache, or have children of their own and "there but for the Grace of God go they." When you bring humanity, and a passionate mom, into the world of "

politics as usual," something happens. We catch the attention of those that hold the political power and that is the start of change!

Moms have been the catalysts for change in many political arenas. Don't mess with a mama lioness!!! She is relentless! She is a lobby mommy, and she will roar!!

I hope to see you at the MOM march and lobby day this coming Sept/Oct!!!