F.E.A.S.T. 
Families Empowered and Supporting Treatment of Eating Disorders 
Member Newsletter - April, 2013
In This Issue....
F.E.A.S.T. News
What can Adult Treatment Learn from FBT?
Keys to Becoming a Better Advocate
F.E.A.S.T. Donation History and Financials
A New F.E.A.S.T. Principle
Register Now!..."At Home with Eating Disorders"...Brisbane, Australia
Upcoming Events
Research Summary
Stay in Touch
From the Executive Director's Desk
Canadian Task Force News
Australian Task Force News
UK Task Force News
U.S. Pacific Northwest Task Force News
F.E.A.S.T. News:
F.E.A.S.T. INTRODUCES NEW  BOARD MEMBERS: 

 

Charlotte Bevan, United Kingdom

Colleen Wise, United States

Lisa LaBorde, Canada

Belinda Caldwell, Australia

 

NEW F.E.A.S.T. PHONE NUMBERS:

F.E.A.S.T. has always been an international organization, and now has five international phone numbers where you can reach us.  Each number connects to the same answering service. As F.E.A.S.T. is entirely a volunteer run organization, these phone lines will be monitored daily, but not staffed. Please be prepared to leave a message and your call will be returned by a F.E.A.S.T. volunteer.

 

US Toll Free   (855) 503-3278

Australia       +61 731886675

Canada          (647) 247-1339

UK                +443308280031

iNum            +833510013425152

(The "iNum" acts like an access code after dialing a local number from this list )

 

CAREGIVER BOOK REVIEWS: YOUR OPINION MATTERS!

Read any books related to eating disorders recently? Did you know that F.E.A.S.T. website has a place for you to list and review books that you have read on eating disorders? 

The Book Review Page needs to be updated with some of the fantastic new books out there by caregivers, clinicians, and recovered patients. Your opinion will help other families determine which books might be useful to them in their journey.  To review books, please visit the F.E.A.S.T. website and add your voice to this resource!

 

ABC NEWS ARTICLE:

Laura Collins, F.E.A.S.T. Policy Director, Dr. Julie O'Toole, F.E.A.S.T. Advisory Panel Member and a F.E.A.S.T. parent were interviewed for an ABC news article on anorexia in young children. recently.  To learn more and read the article go the ABC news website.

  

F.E.A.S.T. EXHIBIT BOOTH AT ICED IN MONTREAL:

Are you attending the AED International Conference on Eating Disorders?

Stop by the F.E.A.S.T. Exhibit Booth to meet some of our members. We'd love to see you there!

 

  Tell a friend, family member, or clinician about F.E.A.S.T!  

 
If you like what we do...
Please consider making a donation to F.E.A.S.T. today.
Visit www.feast-ed.org/Donate.aspx OR send a check to: F.E.A.S.T. PO Box 11608, Milwaukee, WI 53211
F.E.A.S.T. is registered as a nonprofit organization under section 501(c)(3) of the United States Internal Revenue Code.
 
Articles and Reports:

 

What can adult treatment learn
 from FBT?
 

By Mark Warren, M.D.

 

 In the FBTfield of eating disorders, multiple studies have shown that Family Based Treatment (FBT) is the most effective method available to achieve successful weight restoration and maintenance after treatment is completed for adolescents. Unfortunately, specific treatments for adults have not been shown to have the same long term benefits as FBT. Clearly there are many variables involved in this data; however, there are elements to FBT that may point us to a better understanding of what happens for adults.

 

FBT has 3 distinct phases: refeeding, transition of control from family back to the patient, and addressing normal adolescent issues. All of this happens while the adolescent is in the (hopefully) safe confines of their family. For adults, intensive treatment often stops after refeeding and cessation of behaviors, which would be considered only Phase 1 of FBT. It often happens that an adult client is stepped down to a lower level of care from a hospital, residential facility, or partial hospitalization program once refeeding is complete. Step down may be indicated, as a lower level of care may provide more freedom and a chance for a more fulfilling life. The step-down may also be precipitated by insurance concerns or issues related to food, work, or family, as opposed to the completion of treatment. Unfortunately, a potential result of early step-down is that a slow transition to feeding oneself may not occur. Adult patients may find themselves having achieved a healthy weight and have strong motivation and commitment for recovery, but have decreased support around eating and have difficulty with their ability to generalize the skills they have learned in treatment.

 

FBT clinical experience suggests the treatment for an eating disorder may take years. After refeeding is done, significant external accountability, consultation, management, and therapy are necessary to maintain a healthy weight, motivation, and physical safety. Without a good treatment team and a supportive community maintaining recovery is very difficult. Our hope for any individual with an eating disorder is not only that they achieve goal weight, but that they achieve the ability to feed themselves and that they are able to fight against eating disorder thoughts and urges. There will be many bumps in the road, and many obstacles that may emerge. However, if a long term plan, which will likely extend many years, is developed, that will help patients eat well, have a supportive community, feel better about themselves, their bodies, and their ability to live they life they are striving for, health and recovery can be achieved.

____________________________________________________

 

Dr. Mark Warren is the Medical Director for the Cleveland Center for Eating Disorders (CCED). His practice focuses on bringing the most up-to-date research into evidence-based care. 
He is also
 a F.E.A.S.T. Advisory Panel member and recently was  voted as the "Best Doc," appearing on the cover of the Cleveland Magazine. For more information about Dr. Warren, visit the CCED website .

    

 "Today my daughter and husband spent the day watching {their favorite team play}! Some days she really can be a homebody and she was a little apprehensive about going. So I was a little worried how the day would go. They have gone before to games but that was before ED. I do see her making progress in the right direction. I was really glad when she walked in the door with a smile on her face and laughing, joyous...I could see that she had a great time. Smiling while she was telling me all about their day. These days remind me of a normal day without ED. I think I can see a little of the light at the end of the tunnel. I hope that we see more of these kind of days."   - F.E.A.S.T. Parent  
  

Keys to Becoming a Better Advocate

 

By Leah Dean, Executive Director, F.E.A.S.T   

In February I attended the semi-annual National Institute of Mental Health (NIMH) Alliance for Research Progress meeting in Washington DC. One important theme of the meeting was that of working effectively as an advocate.

 

One talk that really resonated with me was by Margaret Anderson, Executive Director of "FasterCures" whose mission is to find and promote ways that speed up the process of gathering scientific knowledge to apply to treatment models. 

 

TIME=LIVES is their call to action.

 

FasterCures did a study of the AIDS Advocacy movement, which has been one of the most successful advocacy campaigns to date, and which resulted in a large and effective investment in AIDS research and treatment strategies.  While listening to Ms. Anderson elaborate on the strategies the AIDS activists used, I found myself thinking "F.E.A.S.T. is already doing that!" or "F.E.A.S.T. could be doing more of that." In any case, it really emphasized to me that F.E.A.S.T. is on the right track, and that this model of advocacy is just what we need to really start to see a difference in the eating disorder world.

 

So, how did the AIDS activists do it, and how can we learn from their model when working with eating disorders?

 

According to Margaret Anderson, key elements of the AIDS treatment advocacy movement included:

 

1.       Attention

2.       Knowledge

3.       Solutions

4.       Community

5.       Accountability to Goals

6.       Leadership

 

Attention

We must get attention for our cause. We must storm the gates and make things happen. NO ONE is more invested in seeing effective progress than the families of eating disorder patients. It is up to us to create the demand for better treatments and insist upon a higher level of priority for eating disorder research.

 

Knowledge

As advocates, we need to do our research. We need to know the SCIENCE. We need to know the science well enough to see the larger picture and explain it to those people in a position to be able to help our cause. This includes understanding the LIMITATIONS of the science and the SCIENTIFIC METHOD, as well as knowing the POLICY and CONSTRAINTS that the scientific community is dealing with.

 

Solutions

Knowing the science, method, limitations, policy and constraints will enable us to propose NOVEL SOLUTIONS to those in the field whose work is more narrowly focused. Ideas based on a combination of knowledge and experience from caregivers in the trenches may seem "cockamamie" to some, but can become a catalyst for professionals who are looking for new approaches in their own work.

 

Community

No one person or organization can do this alone. We must come together as a community and pool our ideas and resources. We can't do it without enlisting PATIENTS. It is critical to welcome patients into the community to call for cures and to participate in clinical trials.  We know that no one treatment will help everyone with an eating disorder, but a systematic approach is essential to begin to understand how to intervene early and effectively target future treatments for each individual.

 

We can't do it without the FAMILIES. It is the families who care for the patients, who pay for treatment, who put their lives on hold; and, as a result, can have incredible insight and experience that others in the community need to be made aware of.

 

We can't do it without RESEARCHERS and CLINICIANS who want to see the field progress too. They are not our enemies, they are people like us dedicating their work to helping our loved ones with whatever tools they have been given and insights they have gained from their own lives and work.

 

Accountability to Goals

As a community of advocates, we need to come together, define some common goals and work towards them, and we need to insist that the professional community do the same. The eating disorder field lacks consensus and standards. All the different approaches to treatment and different avenues of training are confusing for caregivers and can lead to poor and even dangerous treatment decisions for   patients.  We all need to stop focusing on our differences and open up some real avenues of communication that result in better treatment for everyone. This may entail pulling back, taking stock and re-calculating our paths as new research findings become apparent, but it is necessary in order to advance our larger goals.

 

Leadership

We can't stay on track without leaders who do it all - who see the big picture, get positive attention, build communities, do their research, propose solutions, and hold people accountable.  This is how communities are built and how F.E.A.S.T. has grown since its beginning.

 

I would like to add one more key ingredient to this recipe: Collaboration.

 

Collaberation

Eating disorders do not exist in a vacuum. We know they are developmental brain diseases and that co-morbidities are common. There is a larger mental health advocacy community out there, many of whom are working just as hard and tirelessly within the bounds of their own particular causes. One thing to remember is that these people are in a position to understand eating disorders. They have seen mental illness of other kinds and understand that these are not lifestyle-choices, that bad parenting does not cause mental illness, that effective treatment is out there, and that recovery is possible. The mental health community may not be fully on board regarding the emerging science of eating disorders, but they do see the desperate need for better treatments and access to effective services, which puts them in a position to become our allies when given good information.

 

With these things in common, it is only natural to join forces to fight all mental illness by creating common standards of care and goals for promoting mental health research and improving treatment. Once again, we can't do it alone.

 

So, what are the needs we have in common?

  • We need comprehensive standards of care.
  • We need to make sure families are included as part of the treatment team. After all, who else is more motivated to help, and can provide 24/7 structure and support outside of care appointments?
  • We need case managers who look at the big picture for each individual patient and family and take into account co-morbidities, medical concerns, and personal resources in order to triage treatment components.
  • We need providers to take responsibility for overseeing transitions between levels of care where patients often fall through the cracks. 

I could go on, but I think you all get the picture.

 

I urge everyone reading this to pause and take stock. Think about your passions, your goals, your needs and your skills. Think how you personally can apply them to your own advocacy work and within a larger community. Think about what helps and what harms, what promotes change and what creates division, what is a clear voice and what is background noise.

 

I am incredibly proud to be a part of the F.E.A.S.T community. Each day we welcome new members - caregivers, patients, recovered patients, clinicians and researchers. We have a set of guiding principles and we have leadership all over the world that is working to see the big picture and further our goals.

 

We are well on our way to being better and better advocates. Join us?

 

  

Table: F.E.A.S.T. Donation History          
F.E.A.S.T. Board of Directors Adopts A New Principle
 
An organization's principles provide direction and a shared sense of community among members, as well as conveying beliefs to a broader audience. F.E.A.S.T. recently added a new principle which emphasizes the importance of collaboration among all involved in eating disorders- caregivers, professionals and patients. 
  
F.E.A.S.T.'s Principles:
  • NEW: F.E.A.S.T. is committed to a coalition-building model of advocacy work that requires mutual respect among caregivers, professionals, and patients.
  • 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.

 Registration Still Open

"At Home with Eating Disorders"

Brisbane, Australia

  

F.E.A.S.T. in collaboration with the Butterfly Foundation, the Australia and New Zealand Academy for Eating Disorders, and the Eating Disorder Outreach Service is excited to announce the At Home with Eating Disorders conference in Brisbane, Australia on May 23-25, 2013. The conference will provide families and caregivers of people with eating disorders with access to a range of expert knowledge and skills to help them care for, and assist in the recovery of, loved ones with an eating disorder.The conference will also provide opportunities for networking and sharing of ideas and skills. Clinicians and sufferers wanting to learn more about the role of families and carers in supporting recovery are also welcome. Keynote speakers include Drs. Le Grange, Treasure and Bulik. The conference is already attracting considerable attention with over 150 registrations so far. To find more information and to register for this event please visit the At Home with Eating Disorders website.
Other Upcoming Events

 

International Conference on Eating Disorders 

May 2-4, 2013
Hilton Montreal Bonaventure
Montreal, Quebec, Canada

Conference Website

 

Eating Disorders Research Society 19th Annual Meeting 
Bethesda, Maryland USA 
September 19 - 21, 2013

 

Conference Website  

 

National Eating Disorder Association Conference

Washington , D.C. USA

October 10-12, 2013

Conference Website 

 

 

"We refed {our daughter} at home with the Magic Plate. Even after she gained, it still took a long time for her brain to fully heal. During that time, her behavior was difficult. It was  hard to believe that this method would work. We put our trust in the experience of other successful parents here {on Around the Dinner Table forum}, and she is very well now. She eats freely and is happy and healthy. She will graduate from college in two months. Her life is very good! It is not easy and it is not quick. But it is lifesaving."   - F.E.A.S.T. parent 

 

 RESEARCH SUMMARY

 

Preadolescent Early Warning Signs of an Eating Disorder

 

by Cris Haltom, PhD, CEDS and Cathie Simpson, PhD

 

(reprinted with permission from the Eating Disorder Survival Guide for Family and Friends )

                                                                

It has been thought that eating disorders usually occur in young people at the start of adolescence, or puberty (Klump, McGue, & Iacono, 2003). Nevertheless, younger children often begin to show signs of disturbed eating, years earlier. Many people, including researchers, wondered if these signs might be a way to anticipate future, full-blown eating disorders. They wondered whether or not the eating behavior of younger children could accurately predict later eating disturbances and weight-related difficulties in adolescents.

 

Recently, psychology researchers Combs, Pearson, Zapolski, and Smith (2013) found that by noting the behavior around food that children have who are about 11 years old, they could predict fairly well who would have eating disturbances a year later. This was an important finding, not only because we want to be able to steer children away from an awful disease, but also because "disordered eating at a young age also is associated with a broad range of physical and mental health problems during early adulthood" (Johnson, Cohen, Kasen, & Brook, 2002). Remember, eating disorders affect the mind as well as the body.

 

The researchers defined disordered eating to include (a) binge eating, which is uncontrollably eating much more food than "normal," (b) purging one's food by vomiting, diuretics, or laxatives, and (c) restricting what's eaten in order to lose weight. They pointed out that disordered eating isn't the same as a diagnosed eating disorder, but it is highly predictive of a diagnosis of anorexia nervosa or bulimia nervosa. When disordered eating is noticed in early adolescence, there's a nine-fold chance that by late adolescence that young person will be diagnosed with bulimia nervosa and a 20-fold chance that he or she will have a diagnosis of anorexia nervosa (Killen et al., 1994; Kotler, Cohen, Davies, Pine, & Walsh, 2001). The biggest predictive behavior for a future diagnosis of binge eating disorder is loss-of-control eating-not "weight, shape, eating concerns, or negative affect" (Combs et al., 2013, p. 42).

 

In Combs et al.'s (2013) study of 1906 school children, half of the group were boys (908), and half were girls (905). They were all in the fifth grade and enrolled among 23 public schools in Kentucky. A multitude of questionnaires were administered, including the Eating Disorder Examination Questionnaire (Fairburn & Beglin, 1994) and the Pubertal Development Scale (Peterson, Crockett, Richards, & Boxer, 1988), because the researchers wanted to know not only if disordered eating was present, but also how it correlated with the onset of puberty. The children answered both these self-examinations in the spring of 5th grade and again in middle school, a year later, once in the fall and once in the spring. The three sets of answers were then compared and analyzed.

 

Remarkably, Combs et al. (2013) found "substantial disordered eating" (Combs et al., 2013, p. 43) in the 5th grade. For binge eating, 12.1% (231 children) admitted that "in the past two weeks, there had been times when they had eaten what most people would regard as an unusually large amount of food" (Combs et al., 2013, p. 43), and felt they had lost control over their eating at those times. This rate was similar to findings in other studies (Tanofsky-Kraff et al., 2011). Ninety two children purged, and 187 children restricted their food during the 2 weeks before the date of the questionnaire. "There were no differences found between male and female participants, or between African American and European American participants on any study variables" (Combs et al., 2013, p. 43). Reports of each behavior lessened in subsequent examinations, but remained significant.

 

The study found that the alarming rate of binge eating, purging, and food-restriction behaviors in grammar school continued into middle school. Children who binged in 5th grade were 6 times more likely to binge eat in middle school than children who didn't report binge eating. Purging and restriction in middle school was 3 times more likely to happen if the child was purging or restricting in grammar school. These types of disordered-eating behaviors were actually not separate. Children who purged in 5th grade were "4.1 times more likely to [also] binge eat" (Combs et al., 2013, p. 44), and "children who restricted in fifth grade were 5.1 times more likely to purge in fifth grade" (Combs et al., 2013, p. 44).

 

Interestingly, puberty treated girls and boys differently. Girls who entered puberty in the 5th grade were 2.3 times more likely to restrict their eating than girls who had not, whereas it made no difference to boys. They engaged in disordered-eating behaviors whether or not they were experiencing early pubertal onset in the 5th grade. By the end of 6th grade, all the behaviors were tried out by the children who admitted to one or more of them in the first round of questionnaires. This bodes ill for those children, because disordered eating in middle school is highly predictive of eating-disorder symptoms in adulthood (Johnson et al., 2002).

 

Here are some TIPS for family and friends who are concerned about the eating behavior of a prepubescent loved one:

 

  1. Disturbed eating today is predictive of disturbed eating next year and can turn into disordered eating with the onset of puberty. Notice the signs of disordered eating in your child and talk to him or her about what the behavior could mean in terms of his or her health.
  2. No child is too young to start down the path of an eating disorder. Get help from your health care providers, that is, your family doctor, therapist, or nutritionist.
  3. Are there diuretics or laxatives in your home? Lock them up.
  4. Just because your child is a boy, remember that he can be developing an eating disorder in grammar school, too. Try to get closer to him so you two can talk about what you're seeing happening to his relationship with food and his body image.
  5. Unfortunately it still remains true that families discuss "good" calories and "bad" calories and "good" foods and "bad" foods with their children, often as a result of the anti-obesity messages that frequent the media. It is best to stop categorizing foods in this way with your children. Such categorizing leads to avoiding, fearing, and feeling guilty about certain foods and eating

 

REFERENCES

 

Combs, J. L., Pearson, C. M., Zapolski, T. C. B., & Smith, G. T. (2013). Preadolescent disordered eating predicts subsequent eating dysfunction. Journal of Pediatric Psychology, 38(1), 41-49. doi:10.1093/jpepsy/jss094

 

Fairburn, C. G., & Beglin, S. J. (1994). Assessment of eating disorders: Interview or self-report questionnaire? International Journal of Eating Disorders, 16(4), 363-370. doi:10.1002/1098-108X(199412)16:4<363::AID-EAT2260160405>3.0.CO;2-#

 

Johnson, J. G., Cohen, P., Kasen, S., & Brook, J. S. (2002). Eating disorders during adolescence and the risk for physical and mental disorders during early adulthood. Archives of General Psychiatry, 59(6), 545-552. doi:10.1001/archpsyc.59.6.545

 

Killen, J. D., Taylor, C. B., Hayward, C., Wilson, D. M., Haydel, F., Hammer, L. D., . . . Kraemer, H. (1994). Pursuit of thinness and onset of eating disorder symptoms in a community sample of adolescent girls: A three-year prospective analysis. International Journal of Eating Disorders, 16(3), 227-238. doi:10.1002/1098-108X(199411)16:3<227::AID-EAT2260160303>3.0.CO;2-L
  

Klump, K. L., McGue, M., & Iacono, W. G. (2003). Differential heritability of eating attitudes and behaviors in pre- versus post-pubertal twins. International Journal of Eating Disorders, 33(3), 287-292. doi:10.1002/eat.10151

 

Kotler, L. A., Cohen, P., Davies, M., Pine, D. S., & Walsh, B. T. (2001). Longitudinal relationships between childhood, adolescent, and adult eating disorders. Journal of the American Academy of Child Psychiatry, 40(12), 1434-1440. doi:10.1097/00004583-200112000-00014

 

Petersen, A. C., Crockett, L., Richards, M., & Boxer, A. (1988). A self-report measure of pubertal status: Reliability, validity, and initial norms. Journal of Youth and Adolescence, 17(2), 117-133. doi:10.1007/BF01537962

 

Tanofsky-Kraff, M., Shomaker, L. B., Olsen, C., Roza, C. A., Wolkoff, L. E., Columbo, D. M.,   . . . Yanovski, J. A. (2011). A prospective study of pediatric loss of control eating and psychological outcomes. Journal of Abnormal Psychology, 120(1), 108-118. doi:10.1037 /a0021406

 

Cris Haltom is a licensed psychologist in private practice in Ithaca, NY and lecturer in the Dept. of Psychology at Ithaca College. For more information, visit her website.

 

Cathie Simpson earned her graduate degree in clinical psychology from Pacifica Graduate Institute. Her doctoral thesis was on the history of America's obsession with thinness.


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F.E.A.S.T.

Families Empowered And Supporting Treatment of Eating Disorders

 www.feast-ed.org  

 

NEW: Mailing Address: 

P.O. Box 11608 Milwaukee, Wisconsin 53211 USA

 

Email: info@feast-ed.org

 

NEW: International Phone Numbers:

US Toll Free: (855) 503-3278

Australia: +61 731886675

Canada : (647) 247-1339

UK: +44 3308280031

iNum: +833510013425152 (The "iNum" acts like an access code after dialing a local number from  a list.)

 Executive Director, Ext. 101, or Leah Dean at Skype Number: (414)395-2484 

Policy Director, Ext. 102, or Laura Collins at Skype Number: (540) 227-8518

 

  

logo


Dear F.E.A.S.T. Member:

 

Thank you! You are receiving this newsletter because you are one of our 2498 members: families, clinicians, patients, and organizations from 41 countries. We depend on you and appreciate your continuing support and interest in F.E.A.S.T.
 
From the Executive Director's Desk

 

Leah Dean, F.E.A.S.T
  
DIRECTOR'S REPORT
As part of settling into F.E.A.S.T.'s Executive Director's role, I have spent a certain amount of time reviewing past budgets, documents, membership numbers, donation history, etc. 

  

F.E.A.S.T. has not issued annual reports in the past, but as our membership and impact as an organization has grown, I feel the time is right for us to start. You can look for a full report at the end of the year, but for now, as F.E.A.S.T. enters the second quarter of 2013, I wanted to share with our members a bit of historical, demographic and financial background about F.E.A.S.T.
 

HISTORY & MISSION

From the History of F.E.A.S.T. webpage:

 

"In early 2008, a group of parents held an international phone meeting to plan the creation of the first worldwide organization to focus on parents and carers of eating disorder patients. We chose the name Families Empowered and Supporting Treatment of Eating Disorders both for its meaning as a title and for the energy and joy of its acronym. We came together after years of networking between various activists online and in person, most of us participants on  an online forum that had been supporting parents since 2004 under a series of
forum names and web addresses. What we had in common was an interest in supporting patients in an 
evidence-based and family-based way. We shared an interest in the power of families to act assertively and work with excellent specialized treatment professionals in a team approach."

 

F.E.A.S.T. achieved the US 501(c)3 non-profit tax status in April of 2009, and is incorporated as a non-stock organization in the Commonwealth of Virginia, US. From our by-laws:

 

"F.E.A.S.T. is an organization whose primary objective and purpose is to help individuals suffering from eating disorders by supporting and empowering their parents and other caregivers to assist in recovery. F.E.A.S.T. will do this, among other things, by providing educational materials and supportive communities for parents, advocating for parents' rights to appropriate involvement in their child's care, promoting evidence-based treatment, and supporting research, treatment, and education."

 

 

DEMOGRAPHICS & GROWTH

Current F.E.A.S.T. Membership:

2462 Members, 41 countries:

  • Family Caregivers 77%
  • Clinicians & Researchers 12%
  • Patients & Recovered Patients 4%
  • Other (non-family caregivers, friends, organizations, etc.) 7%

Past Year F.E.A.S.T. Website Usage:

  • Website traffic went up 50% between 4/1/12 and 4/1/13
  • 55% of Website traffic is from new visitors
  • Website Audience:

United States 60%

United Kingdom 14%

Canada 6.5% 

Australia 6.2%

New Zealand 2.3% 

  

Around the Dinner Table

Forum Membership:

  

3245 Registered Members

Between April 1, 2012 - April 15,2013:

  • 1173 New Forum Registrations
  • 1740 Members Visited the Forum
  • 645 Members Posted on the Forum

FINANCES & PROJECTIONS

 

As F.E.A.S.T.'s membership and advocacy activity grows, so do our financial needs.  Our projects and activities are becoming too complex to be managed entirely by volunteers, and our membership data is outgrowing our Excel spreadsheet. As a result, our 2013 budget is more than double that of 2012 (for reasons explained below) and future budgets will rise from there. For a more comprehensive look at F.E.A.S.T.'s financial position, see the report HERE.

 

 

F.E.A.S.T. now has four international Task Forces and individual volunteers leading monthly caregiver support groups. These groups require coordination from the Executive Director and need printed outreach materials for face-to-face outreach work. This shift from virtual advocacy to on the ground work is exciting, but adds a new set of administrative challenges and extra printing costs to the budget.

 

F.E.A.S.T.'s Policy Director and Executive Director are seeing more invitations to attend and speak at ED conferences and meetings. This is a direct result of the successful inroads that F.E.A.S.T. has made in forming relationships within the professional community. More professionals are beginning to value the caregiver's point of view and want to hear our insights about what makes for effective treatment within a family centered environment. Of course, having two directors with more opportunities to travel means a higher travel budget.

 

In addition to our Task Forces, F.E.A.S.T. has several committees working on and considering various projects. Our Family Guide Task Force has seen a huge demand for our first publication, Puzzling symptoms: Eating disorders and the Brain. Many clinicians want them to hand out to families, and parents want copies to hand out to schools, doctors, and friends. 

 

We have two more booklets in the works and, while F.E.A.S.T. has budgeted printing costs to supply our own volunteers, we are investigating how to make small quantities of these resources available to others in an efficient and cost-effective way.  Once again, this shift from virtual outreach with downloadable materials to face-to-face work is a direct result of our growing influence within the eating disorder community, but does require more administrative and logistical planning.

 

F.E.A.S.T. is also investigating other initiatives which we believe could contribute to more and better research on eating disorders. Some ideas are to fund young investigator grants and to collaborate with researchers to create an eating disorder patient registry modeled after a similar registry for autism patients.

 

F.E.A.S.T. relies on individual donations to do our work. We do not accept advertising or sponsorships, and our conferences have been carefully planned so that all costs are covered by registration fees.

 

We have been fortunate, in the past, to have received enough unsolicited donations to meet our budget needs. The majority of these donations (86%) were under $500 each, with only 2% being over $5000. In 2012, we received 53 donations totaling $9,320 and two large donations totaling $25,000 from a membership of approximately 2,000 families. (See Table in Main Column)

One of these large donations was a generous restricted grant to be used towards one year of administrative services and streamlining of our technology systems. We are in the process of determining what our administrative and technological needs are and investigating management firms that will be able to work with us. We also hope to be able to consolidate our current technologies into one comprehensive membership based content management system.

 

Of course, committing to a higher level of paid services means setting higher fundraising goals going forward. F.E.A.S.T. has been contemplating when to take this step for several years and we feel we have enough member support and savings in the bank to begin to do this. We believe we can balance our budget with fundraising this year, but we may have to dip into our savings for 2014 and begin to investigate sources of grant money to be able to maintain and expand our services in the future.

 

We are encouraged to see changes in attitudes, and increased support for finding better, evidence-based treatments for eating disorders. In addition, our website usage has doubled over the past year.Going forward, we believe our membership will continue to grow and that a larger percentage of our members will help to meet our fundraising goals and support our services.

 

We could not have had this kind of influence without the amazing number of volunteer hours put in by our members behind the scenes on Conference Planning, this Newsletter, projects like our Family Guide Series of booklets, as well as our Moderated Caregiver Forum, our Task Forces and our ever growing website. 

 

F.E.A.S.T.'s reach is indeed international. Our volunteer Task Forces in the UK and Australia have partnered with other organizations to plan and mange two international conferences, and our Canadian and Pacific Northwest Task Forces have made inroads connecting with local treatment providers and spreading the word about F.E.A.S.T.'s services. 

 

Thank you to all who have worked so hard to make F.E.A.S.T. what it is today. This is your organization and we hope that you will continue to value and support our goals and initiatives going forward.

 

Leah Dean

 

 

 Around the Dinner Table Forum News
 
Moderator Retirement: 

Stubbornmum, who's been with the forum since 2008, is moving on in her life, facing new challenges with the determination we have all come to admire. We wish her all the best and thank her for everything she's done during her time as moderator. Thanks, Stubbornmum, and good luck!

 

NEW Around the Dinner Table Forum "BULLETIN BOARD"

F.E.A.S.T. recently developed a "Bulletin Board" feature for the ATDT forum. This is a public forum where Moderators will post news, announcements, and events. of interest to the ATDT community.

 

The Bulletin Board can be found in the list of forums at www.aroundthedinnertable.org and will be Moderated by forum member YogurtParfait_US. Thank you for volunteering YP!

 

Please read the first FAQ post for more information on what can be posted here. Anyone who has an item for the board should contact F.E.A.S.T. at admin@feast-ed.org.

 

  

 

Canadian Task Force News 

 

 Throughout January and February, task force members attended local ED awareness events and shared F.E.A.S.T. info. Feedback has been very positive. We are continuing to reach out and build contacts. It has been identified that many clinicians are aware of F.E.A.S.T., but identify it as "American." In order to raise awareness of F.E.A.S.T. as an international organization with a Canadian contingent, we have put together an information package and are sending this to all publically funded eating disorder centres in Canada, and as many private organizations and eating disorder support groups, and local chapters of Canadian Mental Health Associations as we can identify. The package contains an introductory letter, copy

of F.E.A.S.T. brochure, brochure for siblings, the puzzling symptoms booklet and information in French where we deemed necessary. To date, over 100 packages have been sent.

 

We are contemplating a project to provide information to educators and have reached out to a new group here in Canada called NIED (pronounced "need"); acronym for National Initiative on Eating Disorders The task force also has requested information on 2014 conference in British Columbia, and inquired if there is a possibility of being part of conference.  Several members are planning to attend the Academy for Eating Disorders conference in Montreal in May.

 

If you would like to join the Canadian Task Force or can provide treatment information in your province or territory, please email one of the three chairs listed on the F.E.A.S.T. Local Support, Canada page.

 

Australian Task Force News
The "
At Home with Eating Disorders" conference for carers in Brisbane, Australia is fast approaching at the end of MayPreparations for the conference are well advanced. Please visit the conference web site for more information.

  

F.E.A.S.T. Australian Task Force and Board Member June Alexander has had three books published in 2013:

 

Binge Eating Disorder - A Clinician's Guide to Binge Eating Disorderco-edited with Daniel Le Grange and Andrea Goldschmidt

 

Ed says U said: Eating Disorder Translator, by June Alexander and Cate Sangster, foreword by Laura Collins

Anorexia Nervosa: A Recovery Guide for Sufferers, Families and Friends, 2nd Edition, by Janet Treasure, June Alexander
 
More information on these books can be found on her website. 
 

On April 5, June Alexander co-presented with Professor Susan Paxton at the 35th Australian Dental Congress in Melbourne. Their presentation was on reflux and related diseases.

 UK Task Force News

 

It's still very cold over here, many families are struggling and one of our shining lights is facing a second round of grueling cancer treatment. Against this background it is sometimes difficult to keep up the enthusiasm for campaigning and raising awareness. However, many of us are still trying and we've been joined by newer members too.

 

As well as the ongoing work in England, Scotland and Wales described in the last newsletter there are several new developments. One member is on the planning committee for EDIC 2014, the international conference planned to take place in London in the Spring of next year. She is encouraging the committee to include speakers directly from and about F.E.A.S.T. as well as other talks of specific interest to parents. Watch this space for news of the conference. Others are writing, either blogging or in book form, hoping to contact a wider audience and spread the word about eating disorders being treatable, biologically-based illnesses. We are still waiting on the government minister, Mr Lamb, who has promised a meeting after the high quality parliamentary debate on eating disorders.  

     

U.S.Pacific Northwest

Task Force News

 

F.E.A.S.T.'s Pacific Northwest (PNW) Taskforce has developed a new brochure called "Eating Disorder Support: Parents Helping Parents." The brochure helps eating disorder treatment providers and other medical providers to connect their patients with local support and up-to-date eating disorder treatment information. PNW Taskforce members are distributing the brochures to Western Washington area hospitals and medical offices. The colorful, professionally printed brochure lists PNW Taskforce's monthly parent & caregiver support group meeting information, books, web links, and video resources, which provide up-to-date information about eating disorders and evidence-based treatment, including family-based therapy (FBT). The brochure also includes a telephone number to reach the PNW Taskforce, with phone calls returned by a Taskforce member. The Taskforce is also considering other formats to make distribution easier for medical providers.