Showing posts with label National Lobby Day. Show all posts
Showing posts with label National Lobby Day. Show all posts

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

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
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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!

Wednesday, October 15, 2014

Together WE DID IT!! (and there's more to be done...!)


Dear EDC Advocates:

I can barely contain myself as I type up this blog!! 

We ("we" includes all +EDCoalition1 Member Organizations and every single advocate (aka: EACH OF YOU)) just got HUGE news from Congressman Ted Deutch's office regarding +Centers for Disease Control and Prevention (CDC) and our advocacy on school-based BMI screening, surveillance and reporting!

Today we learned that CDC reviewed the Dear Colleague letter Congressman Deutch's office initiated and that YOU advocated for, both in-person and virtually, on October 1, 2014.  As a result of the Dear Colleague letter and Joel Richard, Ted Deutch's amazing staffer, having a conversation on our behalf with CDC about the concerns expressed within the Facts and Concerns About School-Based BMI Screening, Surveillance and Reporting and the Dear Colleague letter, CDC decided to IMMEDIATELY start working on several changes to improve availability of information to schools conducting in-school screenings!! These immediate changes include:
  • CDC will update changes to the BMI measurement in schools information available on their Healthy Youth webpage:
    • Create a web page that emphasizes the safeguards and considerations outlined within the BMI Measurement in Schools journal article and executive summary
    • Send out the new page to CDC grantees and CDC partner organizations to disseminate
    • Offer the new page to the Department of Education to send out through their grantees and partner networks
  • Provided targeted webinars on this topic to:
    • Department of Education grantees (e.g., PEP grantees)
    • Presidential Youth Fitness Program grantees
    • CDC grantees funded for school health strategies (note: these make take more time to schedule and/or record)
  • Add cautionary, safeguard language to CDC’s BMI tool for school calculator webpage.

When I had the honor of becoming the EDC's Policy & Communications Director on June 1, 2014, the EDC President,  +Johanna Kandel, and I immediately agreed that BMI screening in schools was an issue we wanted the EDC to champion on behalf of families, treatment providers, researchers, sufferers; on behalf of ALL those impacted by school-based BMI screening.  We had heard too many horror stories from parents, students, school nurses, teachers and others, about some of the ways this practice was taking place in so many schools, and we knew that something needed to be done to put an end to the irresponsible and oftentimes harmful screening practices. 
In early August 2014, Johanna and I met with Joel in Congressman Deutch's office to describe the problems that many of you had relayed to us in private conversations and emails in which you detailed the unsettling (at best) ways that your child, you, your best friend, etc., had endured a BMI screening in school.  Joel listened to us detail your concerns and immediately took the issue to the Congressman.  The next thing we knew, Joel let us know that the Congressman was willing to author a Dear Colleague letter to address the issue with CDC.  Thanks to the Congressman and Joel for their hard work, they provided us the Dear Colleague letter in time for our fall National Lobby Day so that YOU could fight back against this practice by asking Members of Congress to sign their name to the letter and get the attention of CDC.  That CDC has acted so quickly is NOTHING SHORT OF AMAZING (miraculous really); rarely do things happen this fast on Capitol Hill.  CDC responded so quickly in large part because of YOUR ADVOCACY!!

HOWEVER, despite the immediate action by CDC, there is more to be done and we need you to help ensure CDC follows through on the requests of the Dear Colleague letter (which was updated since Joel's conversation with CDC...you can find the revised letter here)  We need you and your friends, family, colleagues, clients (if appropriate) to call your Member of the House of Representatives and ask them to sign on to the Dear Colleague letter by Close Of Business (COB), Monday, October 27, 2014.

As a result of CDC's already-acknowledged commitment to properly address this issue, the Dear Colleague letter has been revised to include two very "easy asks" that are zero-cost (a huge plus!).  The revised Dear Colleague asks CDC "for additional efforts to communicate guidance and recommended best practices, and coordinate with the Department of Education so that schools can administer BMI screening without inflicted unintended harm on students."  (The Dear Colleague letter is also now being copied to the Department of Education's Secretary Duncan.)

To each of you, for all of your advocacy and belief in the EDC addressing this issue for you, with you, together, I cannot say thank you enough for allowing us the honor of championing this cause with you on Capitol Hill.  But we must not yet rest yet. We must make our calls. We must get as many signatures as possible by COB, Monday, October 27, 2014. We must...we can...we will...together.
 

Our work continues, ~Kathleen  
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The Eating Disorders Coalition is so very appreciative to the following organizations and researcher for their collegial spirit in collaborating with us to create the "Facts and Concerns About School-Based BMI Screening, Surveillance and Reporting" document. Without your expertise and dedication to working together as a group to flush things through and suss things out, the document would not have come together so thoroughly. Thank you: The Academy for Eating Disorders (AED),   +Binge Eating Disorder Association, +F.E.A.S.T. Videos (Families Empowered and Supporting Treatment of Eating Disorders), Strategic Planning Initiative for the Prevention of Eating Disorders (STRIPED) and +kendrin sonneville.