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

Monday, March 2, 2015

#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


Saturday, January 17, 2015

CDC Responds to EDC Advocates



News from Capitol Hill
January 17, 2015

Late yesterday we received word from our champion, Congressman Ted Deutch, that CDC formally responded to the Dear Colleague letter regarding BMI screening and surveillance in schools. To be succinct: the response is AWESOME!!! (see pix)


May you each take a moment (or several!!) to reflect on the magnitude of this accomplishment that EACH of you helped make possible. Rarely does an agency make such swift changes to an engrained program. CDC did so because of the hard work of the Congressman and his staff, and because of EACH OF YOU who cared enough to sound off about the reasons why BMI screening and surveillance in schools is not a sound practice, and is in fact oftentimes very harmful. The results of our collective advocacy made a huge difference! Together, as a coalition, we did what EDC advocates have been doing so well together since 2000: We noticed a problem; we educated people about the problem; we shared personal stories to highlight the problem; we advocated for change using our power in numbers at EDC National Lobby Day/Virtual Lobby Day; and we respectfully dialogued with the appropriate people to seek out results that are viable and sustainable.

As many of you know, eating disorder advocacy is not always easy and change is not always swift.
As the EDC celebrates 15 years of advocating on Capitol Hill (and beyond), I think that is something we can each attest to as we reminisce about various legislative efforts that we have worked together on over the years (Mental Health Parity, to name one). But I think what we can also each attest to is that when we work together, as a coalition of varied advocates that celebrates each voice and each person's spirit, our advocacy efforts make the hard work a downright a blessing and a pleasure!

Creating and passing legislation is not for the faint of heart...which is one of the reasons I'm so grateful we are who we are: the EDC. You, the advocates of EDC who make the EDC a Coalition, are a collective of parents, non-profit organizations, treatment-providers, sufferers, survivors, loved ones left behind, siblings, family members, researchers, friends, industry-leaders, colleagues in the field of mental health, and more, who keep my heart alight with hope each day because you're each deeply committed, powerful, convicted, intelligent, unique and strong-of-heart. I KNOW that together we WILL continue to see the positive results of our advocacy --including I believe we will pass legislation to address the myriad of problems that currently pervade the lives of those impacted by eating disorders. We WILL work together to educate all medical professionals about eating disorder prevention, early intervention, symptoms and treatment protocols. We WILL work together to secure additional increases in research funding for those doing the super-amazing work that will undoubtedly help guide treatment protocols and prevention efforts --which will help save lives. We WILL work together to ensure that parity is enforced. We WILL work together to pass legislation that helps all those impacted by eating disorders receive access to benefits and treatment. And we WILL work together to ensure that NOT ONE MORE GREEN SHIRT is ever, ever necessary.

Thank you to each of you who rose up to use your voice as an EDC advocate in 2014 and especially for using your time and voice to help with the Dear Colleague letter. I think back so fondly on our closing-circle at the end of October's National Lobby Day and I am reminded that we are not only a coalition, but we are a family. We are a family of advocates who will always be here to support each other and help keep our internal flames of hope burning (especially on days when it might grow a bit dim or fan out momentarily). We are a family who will forge forward together until we effect the necessary changes to prevent even one more day of suffering, and that forfends another senseless death to these insidious, but very treatable, disorders.

Sending you each a heart-felt hug of deep gratitude, and hoping to see each of you on May 13, 2015!! ~ Kathleen

Thursday, January 15, 2015

2015 Guest Blog #1: F.E.A.S.T.!



F.E.A.S.T. is “Five Years Strong”
by Leah Dean, Executive Director, F.E.A.S.T.

In 2014, F.E.A.S.T. Celebrated its 5th year as a non-profit organization. As the year comes to a close, it is appropriate to take a look back at our accomplishments, take stock of where we are, and invest in a plan that will take us forward towards fulfilling our mission.

F.E.A.S.T.’s Mission is simple:

To support caregivers of loved-ones with eating disorders by:
·         providing information and mutual support
·         promoting evidence-based treatment, and
·         advocating for research and education to reduce the suffering associated with eating disorders.

The Dream:

When F.E.A.S.T. was founded in 2009 our five year goal was to make F.E.A.S.T. obsolete. Our original founding members envisioned:
·         effective, evidence-based treatments for eating disorders accessible to all
·         treatment in the least restrictive environment to provide for the patient’s well-being
·         ED issues as part of all parent, health and mental health discussions
·         Better ED education at graduate/post-graduate levels across disciplines
·         Information for “at-risk” groups
·         No more stigma
·         Families finding answers
·         Families connected and supporting each other worldwide
·         EDs are curable
·         Interdisciplinary research and communication in the health professional community
Five years later, F.E.A.S.T. is still here, staying true to our Mission and our Principles. While our dream is not yet a reality, progress has been made. The eating disorder advocacy community has grown, and F.E.A.S.T.’s founding principles have become more widely accepted and have inspired a new wave of collaboration between families, professionals and patients.

Our Principles:

·         Eating disorders are biologically based mental illnesses and fully treatable with a combination of nutritional, medical, and therapeutic supports.
·         Parents do not cause eating disorders, and patients do not choose eating disorders.
·         Parents and caregivers can be a powerful support for a loved one’s recovery from an eating disorder.
·         Blaming and marginalizing parents in the eating disorder treatment process causes harm and suffering.
·         Patients should receive evidence-based treatment, when available.
·         Families should be supported in seeking the most appropriate treatment in the least restrictive environment possible.
·         Food is medicine: all treatment should include urgent and ongoing nutritional rehabilitation.
·         When the family is supported, the patient is supported.
·         Siblings and parents are affected by a family member’s illness; their needs deserve full attention, too.
·         Parents have a unique capacity to help other parents with support, information, and the wisdom of experience.
·         NEW in 2012: F.E.A.S.T. is committed to a coalition-building model of advocacy work that requires mutual respect among caregivers, professionals, and patients.

Over the past five years, F.E.A.S.T. has established many important working relationships with other eating disorder organizations, and individuals in the field.

·         We have an Advisory Panel of ED experts and advocacy leaders.
·         F.E.A.S.T. is a Hope Circle member of the US Eating Disorder Coalition (EDC).
·         Various F.E.A.S.T. members and volunteers are active members of the Academy for Eating Disorders (AED), and serve on AED Task Forces and Committees.
·         F.E.A.S.T. participates in the bi-annual US NIMH Alliance for Research Progress meetings.
·         F.E.A.S.T. is an Adversity2Advocacy (A2A) Ally Organization (a2aalliance.org)

These relationships have allowed us to partner with other organizations on special events, outreach initiatives, and to create and publish important resources for caregivers.

Events:

·         F.E.A.S.T. has hosted three US Conferences, bringing together professionals, families and patients to share expertise, experiences, and communicate as peers. (Alexandria, Virginia – 2011 & 2012; Dallas, Texas – 2014)
·         F.E.A.S.T. partnered with Janet Treasure, the Maudsley ECHO Project Team and Maudsley Carers to put on a Conference in Nottingham, England in 2012
·         F.E.A.S.T. partnered with the Butterfly Foundation and ANZAED (The Australia and New Zealand Academy for Eating Disorders) to put on a Conference in Brisbane, Australia in 2013.
·         F.E.A.S.T. partnered with the EDC to organize and host "Ten Percent is Unacceptable," a Congressional Briefing at the US Capitol in November, 2012.
·         F.E.A.S.T. has gathered members for EDC Lobby Days to visit and tell their stories at US Legislative Offices, including a special Lobby Day for F.E.A.S.T. Conference Attendees in November of 2012.
·         F.E.A.S.T. partnered with the AED Family Based Treatment SIG to organize an "Ask a Caregiver" Webinar at our 2014 Dallas Conference. This event was livestreamed to more than 100 ED professionals and caregivers around the world. The recorded video has been viewed over 1200 times.
·         F.E.A.S.T. Board member, Becky Henry worked with Mothers Against Eating Disorders (MAED), the EDC, and the Alliance for Eating Disorder Awareness on the planning committee for the M.O.M. (Mothers and Others) March, in Washington DC. F.E.A.S.T. Founder, Laura Collins, was an invited speaker for the event.
·         F.E.A.S.T. attends and exhibits at the AED's Annual International Conference on Eating Disorders. 

Resources:

·         In 2014 F.E.A.S.T., BEDA, AED, and STRIPED worked together with the EDC to revise a 2009 "Talking Points" document to produce "Facts and Concerns About School-Based BMI Screening, Surveillance and Reporting", a new support document for a "Dear Colleague" letter sent to the US Center for Disease Control (CDC).(view PDF)
·         Parent Advocate, F.E.A.S.T. Founding Member, and F.E.A.S.T. Advisor, Mary Beth Krohel, helped to form the AED Medical Care Standards Task Force (now the Medical Care Standards Committee). She has worked tirelessly on the creation and distribution of the AED Guide to Medical Management: "Eating Disorders--Critical Points for Early Recognition and Medical Risk Management in the Care of Individuals with Eating Disorders." F.E.A.S.T. helped raise funds for the 1st print edition of the Medical Guide, and distributes copies at professional and caregiver events.
·         F.E.A.S.T. Family Guide Booklet Series: F.E.A.S.T. has brought together teams of eating disorder research and treatment experts to create a series of educational resources about eating disorders for the general public. Each booklet answers common questions by caregivers with factual, evidence-based information.

Other Collaborations, Successes & Recognitions:

·         F.E.A.S.T. Directors have been invited to contribute to professional workshops, panel discussions, and write opinion articles for the professional journal, Advances in Eating Disorders: Theory, Research and Practice.
·         F.E.A.S.T. Founder, Laura Collins presented: "Advantages of Brain Disorder Language from the Patient/Carer Perspective" at an AED Panel Presentation for the 2012 AED Annual Conference in Austin, TX. This talk led to the article, "The term 'brain disorder': a compass or a map?", which was published in the journal: Advances in Eating Disorders: Theory, Research and Practice Volume 1, Issue 1, 2013
·         F.E.A.S.T. Founder, Laura Collins presented: "Do Carers Care About Research" at an AED Panel Presentation for the 2010 AED Annual Conference in Salzburg, Austria.
·         F.E.A.S.T. raised $14,000 in 2014 for the Charlotte's Helix genetic database project.
·         Mary Beth Krohel (2012) and Laura Collins (2014) were both awarded the AED's Meehan/Hartley Award for Public Service and/or Advocacy.

Looking Forward:

Looking forward, we are excited to see the grass-roots vision of F.E.A.S.T.’s founder, Laura Collins, inspiring new actions by parent advocates that support F.E.A.S.T.’s principles. As an established organization we look forward to identifying specific opportunities to work alongside the many new ED advocacy groups that are forming worldwide. As always, we welcome any individuals who agree with our principles to join F.E.A.S.T. and become one of the dedicated volunteers working behind the scenes to support our mission, goals, and future plans.

For more information about F.E.A.S.T., please visit our website at http://www.feast-ed.org and subscribe to our “Let’s F.E.A.S.T.” Blog at: http://letsfeast.feast-ed.org