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

#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

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  
__________________________

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.