Tuesday, January 12, 2016

Press Release: ANNUAL WORLD EATING DISORDERS ACTION DAY TO TAKE PLACE JUNE 2, 2016

F.E.A.S.T. is proud to be a member of the Steering Committee for the 1st ANNUAL WORLD EATING DISORDERS ACTION DAY!

PRESS RELEASE

FOR IMMEDIATE RELEASE

January 5, 2016 - ANNUAL WORLD EATING DISORDERS ACTION DAY TO TAKE PLACE JUNE 2, 2016

Members of the eating disorder community, including affected individuals and their families, professionals, researchers and policy makers, have united virtually to increase access to accurate information, eradicate myths and collectively advocate for resources and policy change. The first World Eating Disorders Action Day will take place on June 2, 2016 and generate information virtually around the globe. http://WorldEatingDisorderDay.instapage.com.


Eating disorders are serious, treatable illnesses that result from a complex interplay of genetics, biology and environment.  Eating disorders affect up to 70 million people globally including people of all genders, ages, racial and ethnic identities, nationalities and documentation status, abilities, sizes, and socioeconomic backgrounds.  Eating disorders have the highest mortality rate of any mental illness, yet many go untreated despite the fact that new research and methods are increasingly showing positive results for full recovery.

On the heels of the release of the groundbreaking “Nine Truths About Eating Disorders” a global grassroots effort for a World Eating Disorder Action Day was launched to draw attention to these devastating, yet treatable disorders.

According to Amy Cunningham, co-founder of International Eating Disorder Action, “The first ever World Eating Disorder Action Day sends a powerful message to policy makers across the globe on the need for action, underscores the fact that eating disorders don’t discriminate and at the same time gives hope for successful intervention.”

Through virtual and country specific activism, World Eating Disorders Action Day will advance the understanding of eating disorders as treatable genetically-linked illnesses that affect a large cross-section of the world’s population, embraces diversity, and raises awareness amongst policy makers to allocate resources and establish coherent national systems.  Furthermore, the Day offers new connections and global partnerships, grows the advocacy base and creates opportunities for additional actions for change at an international level.

A Steering Committee comprising the Academy for Eating Disorders, Author June Alexander, Beating Eating Disorders, BingeBehavior.com, Eating Disorders Parent Support, Elephant in the Room Foundation, Families Empowered and Supporting Treatment of Eating Disorders/F.E.A.S.T, International Eating Disorders Action, Nalgona Positivity Pride, National Association of Males with Eating Disorders, National Eating Disorders Association, Not All Black Girls Know How to Eat, ReGlamME and Trans Folx Fighting Eating Disorders will provide guidance and represent communities across the globe.


Contact and to join:
Facebook:  WorldEatingDisorderDay
Twitter:  WorldEDday and #WeDoAct
Email:  WorldEatingDisorderDay@gmail.com

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Monday, January 11, 2016

ICED2016 travel Scholarships for Patients & Carers

ICED2016 travel Scholarships for Patients & Carers - Families Empowered and Supporting Treatment of Eating Disorders

Application Deadline: January 15, 2016*

Five travel/registration scholarships for people from the global patient-carer community, at $1500 each.
*Main application. Letters of Recommendation extended until Jan 19, 2016.

Guide to Eligibility

1. Must be a member of AED as of January 2016
2. Demonstrated activity in terms of eating disorder advocacy, education, and/or outreach in the Patient-Carer community.
3. Ability to translate and transfer knowledge gleaned from conference participation to their regional or online Patient-Carer community.
4. Demonstrated need for financial support and/or lack of other sources of support to fund conference attendance. 

Applicants should submit the following materials:

• Personal statement: In 800 words or less, tell us about yourself, including your interests and current work in the field of eating disorders, the funding issues that make your travel difficult to the annual conference, and a clear plan on how you plan to share the knowledge/skills learned at the conference with the patient-carer/eating disorder community in your home region.
• Current Curriculum Vitae (includes academic degrees, appointments/recent employment history, teaching activities, community activities, references or any publications or presentations at eating disorder conferences/meetings/seminars).
• Two letters of recommendation from associates/co-workers/others who can speak to your activities in the field of eating disorders.
All application materials should be sent electronically to AED Headquarters atscholarship@aedweb.org no later than January 15, 2016.

Tuesday, December 22, 2015

F.E.A.S.T. Highlights of 2015

What has F.E.A.S.T. been doing all year?  Read on...

Caregiver Support on "Around the Dinner Table" Forum

F.E.A.S.T.’s “Around the Dinner Table” Forum (ATDT) marked its 11th year in existence as a go-to place for caregivers of eating disorder patients to find support, information, and empowerment. Forum topics ranged from concerns about the transition to college, struggle to achieve weight restoration, signs of recovery and how long does it take, feeling ‘stuck’ and not sure how to proceed with treatment.

Many experienced caregivers with loved ones in recovery continue to visit the forum and mentor new members by sharing experiences, providing links to resources and answering questions about providers or programs available in their corner of the world. Special thanks goes to the ATDT ‘Mod Squad’ who volunteer their time to welcome new members, enforce the rules, and share their knowledge and skills while inspiring hope for recovery.

2015 ATDT Forum Statistics:

936 New Members (YTD)
14,980 Topics
209,441 Replies
224,421 Total posts
507,806 Average page views per month


Let's F.E.A.S.T. Blog

The Let's F.E.A.S.T. Blog kicked off 2015 with the "Five Questions" Blog Series. Eating disorder advocates from around the world were invited to answer the same five questions. This blog series includes insights from eating disorder advocates Kitty Westin (USA), Fiona Bromelow (UK), Sam Thomas (UK), Mary Beth Krohel (USA), Faith Yesner (USA), Becky Henry (USA), Lizabeth Wesely-Casella (USA), Alec Rodney (USA), and Judy Krasna (Israel).

Special thanks to F.E.A.S.T. Outreach Director Lisa LaBorde for coordinating this blog series and for sharing her own insights as a caregiver and ED advocate through her other postings on “Let’s F.E.A.S.T.”


AED International Conference on Eating Disorders (ICED)

April, 2015
F.E.A.S.T. was an exhibitor at the 2015 Academy for Eating Disorders Annual Conference in Boston, MA, USA. Attending AED conferences allows us to connect with researchers and clinicians around the world, many of whom are delighted to find resources to help them engage with caregivers as partners in treatment. During the conference, F.E.A.S.T. distributed hundreds of Family Guides, and brochures and introduced our services to hundreds of clinicians around the world.

AED ICED is an international gathering and provided the perfect venue for an Advisor Appreciation Lunch. F.E.A.S.T.’s Professional Advisors donate their time and knowledge to inform our work as advocates and caregivers. The lunch was well attended and allowed advisors, parents, advocates and other professionals to interact over a delicious meal at Legal Seafood.

F.E.A.S.T.’s presence at AED ICED Boston extended well beyond the exhibit hall. F.E.A.S.T. Founder, Laura Collins presented at two ICED workshops: “Virtually Recovered: Using Blogs, Video Chats, Support Groups and Apps to Meet the Needs of Patients, Practitioners and Caregivers” (with Lori Lieberman, Cate Sangster, Sarah Ravin), and “Difficult Dialogues in Eating Disorders: Can we use AED Relationships to Learn from our Diversity and Advance our Field even when we Disagree?” (with Carolyn Becker, Kelly Klump, Judith Banker).

In addition, F.E.A.S.T.’s Executive Director, Leah Dean and Israel Task Force Chair, Judy Krasna, were officially welcomed as Co-chairs of the new AED Patient-Carer Committee (PCC). We were able to connect with other AED committee chairs and came away with valuable connections and ideas for collaboration with other AED committees and special interest groups (SIGs) at AED. Leah also accepted an invitation to represent the PCC on the AED ICED 2017 Planning Committee. ICED 2017 will take place in June in Prague, Czech Republic.


The F.E.A.S.T. Family Guide Booklet Series

April, 2015
F.E.A.S.T. published the 4th booklet in our F.E.A.S.T. Family Guide Series: “Up To the Plate: The Importance of Nutrition for Understanding and Treating Eating Disorders.”

Laura Collins Lyster-Mensh wrote an initial draft, which Editor in Chief, Debra Katzman, MD, University of Toronto, Canada, used as a starting point for her and her editing team to answer common questions that families have regarding the role of nutrition in treating eating disorders. 

F.E.A.S.T. Executive Director, Leah Dean, served as copy editor for the final draft and arranged for the printing of 5,000 copies. The ‘Nutrition Guide’ and our other three booklet titles can be ordered through our website store, or downloaded as PDF documents.


AED & F.E.A.S.T. Twitter Chat:

November, 2015
F.E.A.S.T. Board Members Leah Dean (USA), Lisa LaBorde (CAN), and Nicki Wilson (New Zealand), answered questions on the topic, "The Road to Recovery: Parents as Partners in Treatment", hosted by the AED Social Media Committee.


“Nine Truths About Eating Disorders”

May, 2015
F.E.A.S.T. was proud to co-­sign "Nine Truths About Eating Disorders," a consensus document that recognizes new scientific knowledge about a group of illnesses that has been poorly understood for a long time. "Nine Truths" was produced by thirteen professional and advocacy groups in collaboration with Dr. Cynthia Bulik, PhD, FAED, Distinguished Professor at the Univ of North Carolina, Chapel Hill.

The “Nine Truths” document offers a strategy to increase public awareness and understanding about eating disorders and end the dissemination of misinformation about the typical sufferer and their family. The “Nine Truths” have been translated into multiple languages.

F.E.A.S.T. is thrilled to be part of this united effort to dispel stigma and raise understanding with the ultimate goal of bringing families and caregivers together with empirically supported care. F.E.A.ST. believes that empowered caregivers are essential to the treatment and recovery process. 

Truth #1: Many people with eating disorders look healthy, yet may be extremely ill. 
Truth #2: Families are not to blame, and can be the patients’ and providers’ best allies in treatment. 
Truth #3: An eating disorder diagnosis is a health crisis that disrupts personal and family functioning. 
Truth #4: Eating disorders are not choices, but serious biologically influenced illnesses. 
Truth #5: Eating disorders affect people of all genders, ages, races, ethnicities, body shapes and weights, sexual orientations, and socioeconomic statuses. 
Truth #6: Eating disorders carry an increased risk for both suicide and medical complications. 
Truth #7: Genes and environment play important roles in the development of eating disorders. 
Truth #8: Genes alone do not predict who will develop eating disorders. 
Truth #9: Full recovery from an eating disorder is possible. Early detection and intervention are important.


NEW: F.E.A.S.T. Israel Task Force

June, 2015
F.E.A.S.T. is proud to announce a new Local Task Force, chaired by Judy Krasna in Israel. Judy also co-chairs the AED Patient-Carer Committee and was invited to be a guest host for the AED Twitter Chat: "Treating Eating Disorders in the Orthodox Jewish Community"


Australasian Activities:

May, 2015
F.E.A.S.T. Founder, Laura Collins Lyster-Mensh was welcomed to Australia by Don Irvine and other ‘FEASTies,’ in Perth, where she spoke at the “Bridging the Gap: Collaboration with Clinicians and Carers” event in Perth, AUS, hosted by Bridges Eating Disorders Association of Western Australia, Inc.

From Perth, Laura travelled to Melbourne to give the Keynote Presentation “From Fear to Fierce - Transforming parents into a powerful treatment ally,” at the 2nd “At Home with Eating Disorders” (AHWED) Carers Conference.

F.E.A.S.T. Board Member and Australian Task Force Chair Belinda Caldwell, represented F.E.A.S.T., in partnership with The Butterfly Foundation, the Victorian Centre of Excellence in Eating Disorders (CEED) and the Australia & New Zealand Academy for Eating Disorders (ANZAED) for the planning of the 2nd AHWED conference. 

Belinda also partnered with Laura to present a Pre-Conference Clinician Workshop: “Families and Carers as Allies in the Treatment of Eating Disorders.” Also presenting to the carers at AHWED was F.E.A.S.T. Dad and Task Force volunteer, Don Irvine, and F.E.A.S.T. Board member Nicki Wilson from New Zealand.

August, 2015
On the Gold Coast of Australia ‘FEASTies’ Belinda Caldwell, Don Irvine and Nicki Wilson attended the 2015 ANZAED Annual Conference. F.E.A.S.T. shared an exhibit table with another parent-founded charity, the Eating Disorders Association of New Zealand (EDANZ). During the conference, F.E.A.S.T. distributed hundreds of Family Guides, and brochures and introduced our services to hundreds of ED Clinicians in Australia and New Zealand.

In addition, F.E.A.S.T. Dad and Australian Task Force Member, Don Irvine and Dr. Rod McClymont presented a workshop entitled “Mobilizing male Loved Ones As Treatment & Recovery Resources,” which was created in collaboration with writer and family advocate Joe Kelly, and clinician Michael P. Levine.

November, 2015
The relationships forged between local F.E.A.S.T. volunteers and ANZAED led to Don Irvine’s involvement in the creation of the recent ANZAED Position Statement on Inpatient Services for Eating Disorders. F.E.A.S.T. is proud to endorse this document, which aligns well with F.E.A.S.T.’s Founding Principles. In addition, Nicki and Belinda were asked by ANZAED to take part in a newly formed Carer-Consumer Task Force.


Canada Activities:

Members of the F.E.A.S.T. Canada Task Force also had a busy year.  In addition to providing phone support for Canadian families, they continued to distribute packages of F.E.A.S.T. informational materials to physicians, clinics and families.

February, 2015
F.E.A.S.T. Canada volunteers staffed a F.E.A.S.T. exhibit table for Eating Disorders Awareness Week in Guelph, Ontario.

October, 2015
F.E.A.S.T. Canada volunteers staffed an exhibit table at a Carers Workshop with Professor Janet Treasure in Kitchener, Ontario.

Also in October, Canada Task Force Co-Chair Laura Beattie spoke at the “M.O.M. March Against ED” in Toronto, at the request of the National Initiative for Eating Disorders (NIED) Organization.

Other Canada Task Force Activities from 2015 included:
  • Hosting a NIED Symposium on "Including Families in Care". 
  • Serving on the review panel for Children's Hospital of Eastern Ontario parent support online program, Ottawa.
  • Participating in a study on Transition Age youth issues at Hospital for Sick Children, Toronto.
  • Attending the Annual General Meeting for the Eating Disorders Foundation of Canada.
  • Planning and Workshop Panel Participation for ASSIST Mental Health Leaders for the Ontario Ministry of Education on Eating Disorders.
  • Helping to plan a Parent Support Group for McMaster Children's Hospital, Hamilton.
  • Attending meetings with Members of Parliament and clinicians on feasibility of recruiting for ANGI25K in Canada.
  • Responding to a request for translating the F.E.A.S.T. Family Guides into French Canadian with a cost estimate and proposal. (Set aside due to lack of funds)

United Kingdom Activities

May, 2015
F.E.A.S.T. UK Task Force volunteer Erica Husain hosted a F.E.A.S.T. exhibit table at a UCL Clinician Training Workshop talk by Dr. James Locke. She distributed many of F.E.A.S.T. Family Guide booklets and brochures and spoke with workshop participants about F.E.A.S.T.’s mission and support services for carers.


January - November, 2015
F.E.A.S.T. UK Task Force volunteers remain engaged with the Charlotte’s Helix genetics initiative, which F.E.A.S.T. was instrumental in putting into motion in 2013. http://www.charlotteshelix.net/

2015 Helix awareness and fundraising activities have included:

  • Two musical performance/art auction/fundraising events were held at Covent Garden in January and November.
  • Publicity for the January event included an interview on BBC Radio 4 Woman’s Hour, featuring F.E.A.S.T. Advisor, Prof. Cynthia Bulik talking about genetics, alongside Ulrike Schmidt from the Maudsley Hospital. Click to listen to the interview. 
November – December, 2015
F.E.A.S.T. Volunteer, Jen Haken has been working hard to jump-start some local parent support groups in England. And three meet-ups took place in November and December. For more information on how to connect with these groups, be sure to sign up for our UK Announcement email list.


Looking forward to March, 2016…
F.E.A.S.T. Board Member Susan Ringwood, and F.E.A.S.T. Member Eva Musby each had their workshop proposals accepted for the 2016 Eating Disorders International Conference (EDIC), hosted by the Institute of Education in London and B-eat (Beating Eating Disorders). Both workshops will focus on issues related to utilizing, empowering, and supporting carers as a part of the treatment process.


United States Activities

The Pacific Northwest Task Force continues to host a monthly parent support in Seattle, and has begun a second parent support group in Bellingham, Washington which currently meets 2-3 times a year.

September, 2015
F.E.A.S.T. Executive Director, Leah Dean travelled to Washington, DC for the NIMH Alliance for Research Progress Meeting.

October, 2015
F.E.A.S.T. Outreach Director, Lisa LaBorde travelled from Toronto, Canada to Ann Arbor, Michigan, USA to speak at the Third Annual Conference on Eating Disorders: Integrating Clinical and Research Findings in the Treatment of Eating Disorders.

F.E.A.S.T. Board Member, Becky Henry served on the planning committee for the “M.O.M. (Mothers and Others) March Against Eating Disorders in Washington DC. F.E.A.S.T. Executive Director, Leah Dean and F.E.A.S.T. Founder Laura Collins attended the event. Leah and many other F.E.A.S.T. members then met the next day for the Eating Disorder Coalition’s (EDC) Fall Lobby Day in support of the Anna Westin Act.

The day of the M.O.M. March, F.E.A.S.T. hosted a "Lunch & Learn" event featuring a talk by Dr. Mark Warren. Thirty-nine parents, patients and advocates attended, most of who headed directly to the US Capital afterwards to attend the M.O.M. March.



2014 Activities

For a more detailed look at last year's activities, finances, and member statistics, follow the link below to read our 2014 Annual Report.

Support Us!

All of F.E.A.S.T.'s support services are provided for free. However, as an all volunteer-run organization, we operate on a very tight budget. Many of our volunteers not only spend their time, but their own money to travel and represent the interests of caregivers. 

We do not take sponsorships or donations from eating disorder treatment services, and rely on YOUR individual donations to support our operations. Every donation, whatever the amount, is used wisely and is very much appreciated!

If you value the services we provide, please consider making a donation to F.E.A.S.T. today!



Monday, August 31, 2015

Advocacy Mondays with Judy Krasna

1. How did you find your path to parent advocacy?

Trust me, I never set out to be a parent advocate. After I started helping other parents find treatment for their children, I came to realize that my own frustrating treatment experience was the norm and not the exception. I became extremely frustrated at the lack of effective treatment here in Israel and at how parents were either marginalized or blamed altogether; and at some point, almost as a knee jerk reaction, I threw my hat in the ring as a parent advocate. I do not want any parent to feel as helpless and as scared as I was, and I don’t want to accept the current treatment situation as “the best that we can do”. There is better, and I am working to try and get better eating disorder treatment for Israeli patients and families. 




2. What does your advocacy work consist of/how do you define advocacy?

To me, advocacy is about supporting people who need help and trying to promote change by fixing faulty or broken systems.  Here in Israel, I am working with the Israeli Association for Eating Disorders to try and show them how parents can offer them perspective and experience that is beneficial and valuable when it comes to improving patient care. I am also trying to influence decisions that affect eating disorder treatment across the country.

I write a blog that talks about my daughter’s anorexia from my vantage point as a mom because I want to send the message that it’s okay to talk about eating disorders, they shouldn’t be stigmatized or swept under the rug. I also want to bring forth a better understanding of eating disorders and those who suffer with them.

I work one on one with parents, giving them guidance on where to find the best treatment and eating disorder resources, how to avoid pitfalls, and trying to empower them to whatever degree I can. I have a lending library of great books on eating disorders that I have bought over the years for the purpose of reading them and then passing them on to others. The more knowledgeable we are as parents, the more empowered we are to help our children.

On a more global level, I am a co-chair of the Academy for Eating Disorders’ Patient-Carer Committee (along with F.E.A.S.T’s own Leah Dean). This is an exciting new opportunity for patients and parents to raise our profile within the AED and to allow for the exchange of ideas between parents, clinicians and researchers. We are working on getting eating disorder resources/information to the people who need it, on improving medical care standards, and on other worthwhile projects which have the potential to benefit the parent community.


3. What change do you hope to affect?

I hope to make parents feel less scared and less alone, and I want them to have access to the best possible treatment for their child. To this end, I am trying to build a treatment database of both public and private treatment options in Israel. I am trying to push Israeli treatment centers to start using FBT, because some of the methods that are used here are not evidence based and have the potential to do more harm than good. I hope to make clinicians see that parents who have a loving, healthy relationship with their child should be pulled closer in treatment and not pushed away, and that we parents have perspective and knowledge that can help them improve patient care.



4. What are some of the challenges/frustrations inherent to this type of advocacy?

In Israel, we are more or less two moms fighting an entire professional community in a fervent desire to affect desperately needed change. Too many people aren’t getting treatment at all, or they are getting ineffectual treatment. Too many people are falling through the cracks. The professional community has many collective years of experience, and I am just a mom who is not even a native Hebrew speaker trying to tell them that in my non- professional opinion, some of the methods, practices, and systems that they are using are outdated or not getting the job done well enough. Who am I to tell them this? Especially when many of these professionals view parents as the root cause of our child’s eating disorder and already consider us to be public enemy #1. Under these circumstances, it’s hard to advocate for better treatment, but we do it anyway.

On the public front, everyone seems to believe that the thin ideal and the media is causing eating disorders and no one is all that interested in hearing that science is proving otherwise. So educating people about anorexia is especially hard because first you have to wipe out their preconceived notions. 


5. Top 5 things you would share with a family facing a new diagnosis?

1.     Don’t choose the least expensive treatment or the most convenient treatment, choose the best treatment. You only get one shot at treating an eating disorder while it’s still in the initial stage, make it count even if it strains your bank account or keeps you in the car for hours every day.

2.     Recruit whatever help you will need to get through the next few months. Lean on your family and friends, get people to send in dinner or cover your carpools or take your other kids to a movie or do whatever it is that you no longer have the time to do. There is no shame in asking for help. If someone who you love needed you, you would be there for them. Now is the time to let them be there for you.

3.     EDucate yourself. Knowledge is power. You have to know what you are fighting against so learn everything you can about your child’s eating disorder and how you can help him/her beat it. Check out the resources section of the F.E.A.S.T website.

4.     Join online parent forums. Around the Dinner Table was a lifesaver to me. Friends and family are great, but there is nothing like the support that you get from someone who has walked a mile in your shoes and who truly understands what you are going through. The practical advice that other parents offer is truly invaluable.

5.     Use your instincts. If you have doubts about the efficacy of your child’s treatment or about the methods that they are using, ask questions. If you don’t like the answers, consider making a change. I wish that I had followed my instincts, which were screaming at me that the place where my daughter was being treated was only making her eating disorder worse. By the time we pulled her out, so much damage had been done.

Most of all, hang in there. Things are going to get worse before they get better, but they WILL get better.













Judy Krasna, originally from the US, currently lives in Israel with her husband, her 22 year old triplet daughters, and her 13 year old son. She ia party planner who helps people from abroad celebrate their life cycle events in Israel. 

When one of her daughters developed anorexia, Judy and her husband were forced to navigate the treatment system in Israel alone and without support. Judy became a parent advocate, helping other parents find treatment for their children and offering them advice based on her own experience. A few years ago, Judy began a blog on Times of Israel on the topic of her daughter's anorexia http://blogs.timesofisrael.com/author/judy-krasna/ and more recently, Judy began working with the Israeli Association for Eating Dis
orders as a parent consultant. She is a co-chair of the Academy for Eating Disorder's Patient Carer Committee. 

Wednesday, August 26, 2015

Parents and Carers: Please consider participating in this survey by Sept 7th, 2015

Parent/Carer insight sought to assist in developing early identification resources.

The team at the Victorian Centre of Excellence in Eating Disorders are currently developing an early intervention resource package in direct response to feedback provided by parents and carers. The aim is to have the package available for families and carers at the first point where they seek help.

This resource specifically aims to assist parents or carers to determine how concerned they should be about their young person; what eating disorders are and are not; when to escalate access to treatment; where to seek treatment and what to expect; and what parents can be doing at home in the meantime.

A focus group was undertaken with 15 parents and they are now wanting to expand on the very valuable learnings gleaned from the group through wider survey.

So, if you could please take the time to take the survey and to forward (via the link below) on to any families you think will be willing to assist with the research.

Please note that the survey closes at 5 pm on Sept 7th, 2015

https://www.surveymonkey.com/r/CEEDFamilyconsultation

Looking back, what did you notice first?  What were the early signs or points of concern?