Monday, May 4, 2015

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

Thursday, April 30, 2015

More Details on Anna's Law

The Anna Westin Act is in the final stages...YAY!!...and we're so close to being able to share the entirety of the bill with you, our amazing advocates. We can hardly wait!

For now...here are a few facts about the bill thus far:

The Anna Westin Act's language was drafted and vetted (repeatedly) by numerous advocates and individuals, including: family members of those impacted by eating disorders, researchers, treatment providers of varying profession, non-profits, academics, attorneys, Members of Congress, recovered individuals and more!

The Anna Westin Act focuses on several things, including: training of health professionals on evidence-based findings, promising emerging best practices, and/or recommendations that pertain to the identification, early intervention, prevention of the development of eating disordered behaviors and the treatment of eating disorders. 

The Anna Westin Act addresses (but is not limited to) things such as training and courses based on: how to help prevent the development of eating disordered behaviors, identify, intervene early and appropriately and adequately treat eating disordered patients; how to identify individuals with eating disorders, those who are at risk for suffering eating disorders and therefore at risk for the serious medical and mental health complications associated with eating disorders; how to conduct a thorough and comprehensive assessment of the individual and familial health risk factors; and how to conduct a comprehensive assessment of a treatment plan.

The Anna Westin Act addresses so much more and we apologize for only giving snippets at a time but we want to make the bill as awesome as possible before we present it to you fully --your opinion matters so much to us!! ~ Plus, legislative counsel is busy figuring out which CFR and what sub-sections of already existing law will be amended with the Anna Westin Act...it's a tedious task but someone has to do it! ;-) As always we will share more just as soon as we can.

Writing the Anna Westin Act and getting the bill introduced (with bi-partisan support!) is an incredible honor and we are so grateful for your patience, support and tireless advocacy with us.
Please join us at May13th's ‪#‎EDNationalLobbyDay‬ and show your support for Kitty Westin and her family as together we introduce ‪#‎AnnasLaw‬. ‪#‎TheTimeIsNow‬  
To Register for Lobby Day, please visit: www.eatingdisorderscoalition.org

Wednesday, April 22, 2015

May 2015 Congressional Briefing


Why attend ‪#‎EDCNationalLobbyDay‬? ...SO many reasons...including these two incredible eating disorder professionals are speaking at the Congressional briefing:  Edward P. Tyson, M.D. and Chase Bannister, MDIV, MSW, LCSW, CEDS.

Dr. Ed Tyson
Dr. Tyson has specialized in eating disorder treatment for over 25 years. A national and international speaker, he shares his expertise and experience in the field of eating disorders with professionals and others. He has been published in over ten different medical journals to share his expansive knowledge of eating disorders to the public. Dr. Tyson is involved with the National Eating Disorder Association, the International Association for Eating Disorders Professionals and the Academy of Eating Disorders. Co-author of the Academy of Eating Disorder’s Medical Guide for Eating Disorders, he also authored a chapter on medical assessment for “Eating Disorders—Bridging the Research-Practice Gap”. Currently, Dr. Tyson teaches medical and nursing students at the University of Texas, operates a private practice and is an attending physical at Eating Disorder of Fresno in Puente de Vida.

Chase is Founder, Senior Vice President, and Chief Strategy & Clinical Integrity Officer of Veritas Collaborative, a specialty hospital for the treatment of eating disorders. Highly regarded for his emphasis on constituency-building and practice ethics, Chase carries an unmistakable zeal for advancing public awareness of eating disorder prevention, best-practice treatment, and sustainable recovery.  He is a Licensed Clinical Social Worker in North
Chase Bannister
Carolina, and is credentialed as a Certified Eating Disorder Specialist by the International Association of Eating Disorders Professionals (iaedp). Chase was elected inaugural president of the North Carolina iaedp Foundation Chapter, is an active member of The Academy for Eating Disorders, and is proud to serve on the national board of The Eating Disorders Coalition for Research, Policy & Action.

A Phi Beta Kappa graduate of Wofford College, Chase was the first to earn concurrent graduate degrees in Social Work & Divinity offered as a collaboration between The University of North Carolina at Chapel Hill & Duke University.  Chase is the recipient of The Arthur B. & Ida Maie Rivers Award for Integrity, Virtue, Gentleness, and Character as well as The L. Harris Chewning Award for Academic Scholarship and Intellectual & Moral Integrity.



Tuesday, April 21, 2015

Urgent Action Alert

DEADLINE THURSDAY, 4/23 MIDNIGHT, EST

Dear EDC Advocates and Activists:

We are asking for your stories describing negative experiences and outcomes related to corporate wellness programs. DEADLINE 4/23 - Thursday - MIDNIGHT, EST.

Did a 'Wellness Program' in your office lead to: discrimination? the triggering of behaviors? did your company failure to inform or provide "Reasonable Alternative Standard” policies? did you relapse into or develop an eating disorder because of a wellness program? were you caused any other harm?

We need your help in flooding the Equal Employment Opportunity Commission (EEOC) and humanizing the reasons why invasive questioning, wellness programs based on weight metrics (such as BMI), Biggest Loser style competitions and punitive fines are a direct discrimination to the 15 million Americans with eating disorders.

Please send your story of how a 'Wellness Program' has negatively influenced you to Lizabeth Wesely-Casella at admin@bingebehaivior.com or km@eatingdisorderscoalition.org

Thank you for your prompt attention and support in this activism. Your stories matter!

Friday, April 10, 2015

Action Alert: Wellness Programs

Dear EDC Advocates and Activists:

We have an urgent request and an exciting opportunity to help shape legislation which has significant effect on our community. We are asking for your letters that describe negative experiences and outcomes related to corporate wellness programs, including letters from people suffering eating disorders and/or stories from treatment providers describing the impact these programs have had on their practice.

We Are Interested In Your Stories That Detail:

• Discrimination you faced as a result of a Wellness Program;
• Things from a Wellness Program that impacted your eating disorder thoughts/behaviors;
• A failure to inform you or provide you with "Reasonable Alternative Standard" policies;
• A relapse into an eating disorder because of Wellness Programs; and
• Any other harms resulting from corporate Wellness Programs

These stories will be aggregated and submitted to the Administration and/or the EEOC (Equal Employment Opportunity Commission) to help inform and strengthen the employee protections that are currently in jeopardy due to Senate bill 620, the Preserving Employee Wellness Programs Act. This bill proposes changes to existing employee protections that would allow employers to ask invasive medical history questions including those about mental health and genetics. Also, it would allow businesses to penalize employees who choose not to participate in the programs with fines up to $4,000.
We need your help in flooding the EEOC and humanizing the reasons why invasive questioning, wellness programs based on weight metrics, Biggest Loser style competitions and punitive fines are a direct discrimination to the 15 million Americans with eating disorders – many of which are part of America’s workforce.
Please submit your personal stories, or stories of how your practice has been impacted by these outcomes, by APRIL 13, 2015 to Kathleen MacDonald at km@eatingdisorderscoalition.org or directly to Lizabeth Wesely-Casella at admin@bingebehaivior.com.

Thank you for your prompt attention and support in this activism. Your stories matter!

Wednesday, April 8, 2015

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!

Tuesday, March 10, 2015

#TheTimeIsNow -ED Legislation

*teaser alert...but Yay!!*

Dear EDC Advocates,

We will have word soon about when our legislation for 114th Congress will be introduced!! So excited about what's in store legislatively this session and can hardly wait to share all details soon!!

That said, as you know, it takes time to get bills drafted and timing the introduction of a piece of legislation is so very important. This process can probably feel way too slow at times, and for that I apologize! Working on the Hill is often a lesson in patience for us advocates and as I've posted here a few times, "we are impatient with you." And/But...I want to encourage you to trust the legislative process and know that even though it might seem like frozen molasses moves faster than the introduction of legislation, it's worth the wait (I promise).
On a related note, I wanted to put to rest the rumors some have whispered that the EDC isn't introducing legislation this session and that we're not working on early intervention. I'm not sure where or why those rumors got started, but nothing could be farther from the truth. If you ever have any questions about the work we're doing (the work we're doing together WITH you), please never hesitate to reach out to me.

Lastly, I wanted to again offer a very sincere THANK YOU to each and all of the advocates who are supporting the work of the EDC and who have reached out to me directly in an effort to communicate their legislative hopes and dreams. If you have any legislative hopes and dreams you can either email me at: km@eatingdisorderscoalition.org or fill out our survey: https://www.surveymonkey.com/s/FriendsoftheEDC
‪#‎TheTimeIsNow‬ ‪#‎OurWorkContinues‬ ~Kathleen