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

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

And much more…

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

MOMMarch Commemorative Book

January 5, 2015

HAPPY NEW YEAR to each of you!!

Thanks to three fabulous and amazing EDC volunteers, Mary Beth Puri, Sharon Mathiason and Amy Grossman, we are thrilled to share with you this commemorative book from the M.O.M. March & EDC National Lobby Day 2014!!
Mary Beth, Sharon and Amy made sure that the favorite photos that people sent in after the March/Lobby Day were all included in the book, plus some! Without their help, this book would not exist...so to them we say, Thank You so much for giving of your time and energy towards this book of very special moments and memories!!

Feel free to order as many copies as you wish! ~ Kathleen

Here is a link to the book if you wish to share with others: https://2014mommarchedclobbydaybook.shutterfly.com/

EDC Hopes for 2015

from: http://www.edcatalogue.com/edc-hopes-2015/


Eating Disorders Coalition’s Hopes for 2015
By Kathleen MacDonald

To share our hopes for 2015, I’d like first to reflect a bit on the last six months of 2014, as they have been an incredible whirlwind of advocacy, the likes of which I hope remains in our hearts and minds for many years to come.
My official role as Policy & Communications Director for the EDC began on June 1, 2014, though I had been transitioning into the role since EDC Spring National Lobby Day in April 2014.  From day one, standing alongside our countless EDC Advocates and Member Organizations, I have felt evermore certain that our collective dream of passing the FREED Act and other legislative initiatives pertinent to all those impacted by eating disorders, IS possible.  The current pulsing through the eating disorder advocacy world is nothing short of amazing, and so very humbling.
A few of the most remarkable and humbling experiences from  2014 included when over 200 of the most heroic people on our planet came together on Capitol Hill at the first M.O.M. March, demanding, “NO MORE GREEN SHIRTS!”  (Green was the color t-shirt people wore if someone they loved had died from an eating disorder).  The following day at the EDC Fall National Lobby Day, we charged forth, with our largest group of advocates ever, into House and Senate offices to tell Members of Congress that we are on a mission to: eliminate eating disorders, increase research funding, gain access to appropriate and efficacious treatment, and develop effective prevention, intervention and training programs for all those impacted by eating disorders.  During Lobby Day, Congress and their staff could not deny the tender, horrific and unacceptable stories that mothers, fathers, sufferers, treatment providers, business owners, siblings, and loved ones shared with them – urging them to know that “The Time Is Now” to pass legislation to address eating disorders.
On January 2, 2015, the 114th Congress convenes, and we will be there – all of us – to advocate, whether via EDC National Lobby Day, tweeting about legislation, or phoning our members of Congress.  We will be there to remind Congress that “The Time Is Now” to address eating disorders as the epidemic they are. We will be there to remind Congress that the complexity of eating disorders necessitates an increase in research funding. We will be there to remind Congress that medical professionals need training on eating disorders, lest people will continue to needlessly suffer. We will be there to remind Congress that eating disorders are not a partisan issue. We will be there to remind Congress that military members deserve better access to treatment. We will be there to remind Congress that ALL persons deserve access to treatment. We will be there to remind Congress that at least one person every 62 minutes dies from an eating disorder. We will be there to remind Congress that too many lives have been prematurely ripped away from this earth. People’s loved ones have died senselessly from a treatable disease…a disease that Congress can, and must, make a difference on in 2015.  And we will be there to remind Congress that they must ensure legislation passes in 2015, such that not one more life is lost to these vicious and insidious disorders and to make certain, “NO MORE GREEN SHIRTS!”.
We have great hope that in 2015, advocates will continue to collaborate like we all did for the M.O.M. March and the EDC Fall National Lobby Day. We have great hope for 2015 that every single person impacted by eating disorders will KNOW that their voice MATTERS, that they are necessary to effect change, and that together we CAN, and WILL, make a difference. Please join us to advocate against eating disorders in 2015. Your voice truly does make all the difference.

To see pictures from 2014′s advocacy, please visit ourFB page: https://www.facebook.com/EatingDisordersCoalition/photos_stream

...Our work continues, ~Kathleen