Keys to Becoming a Better Advocate
Leah Dean, Executive Director, F.E.A.S.T

I recently attended the semi-annual NIMH Alliance for Research Progress Meeting in Washington DC. While I do plan to write up a more comprehensive report on the overall event, I felt a strong inclination to focus this post on one particular theme of the meeting – that of working effectively as an advocate. 

One of many interesting talks at the Alliance Meeting 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.

Faster Cures 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.
  

How did they do it?

Key Elements of the AIDS Advocacy Movement:

1.       Attention
2.       Knowledge
3.       Solutions
4.       Community
5.       Accountability to Goals
6.       Leadership

How can we learn from their model when working with eating disorders?

Attention

Get attention for your cause. Storm the gates, make it happen. No one is more invested in seeing effective progress than the families of eating disorder patients. It is up to us to make it happen, to demand better treatments and a higher priority to 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 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 with a more focused point of view about their own particular research and theories. Even our cockamamie theories, if based on some combination of knowledge and experience, can become seeds for others to nurture in approaching their own work.

Community

No one person can do this alone. We must come together as a community and pool our ideas and resources. We can’t do it without PATIENTS. Bringing the patients into the community to call for cures and to participate in clinical trials that may not help them, but could help others in the future is critical. We can’t do it without FAMILIES who care for the patients, pay for treatment, put their lives on hold, and as a result can have incredible INSIGHT and EXPERIENCE that others in the community need to be aware of. We can’t do it without RESEARCHERS and CLINICIANS. 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 gleaned from their own lives and work.

Accountability to Goals

We need to define common goals and work towards them. This may entail pulling back and taking stock and re-calculating the path. These are uncharted waters and we are all sailing in different directions trying to find a common port in the storm.

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.

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 as we are within the confines of their own particular causes. One thing to remember is that these people get it. They have seen mental illness of other flavors and understand the concepts that these are not lifestyle choices, that bad parenting doesn’t cause mental illness, that effective treatment is out there and that recovery is possible. They may not get it yet for eating disorders, but they are primed to understand when given good information and they also see the desperate need for better treatments and access to effective services.

With these things in common, it is only natural to join forces to create common standards and goals for promoting mental health research and improving treatment. Once again, we can’t do it alone. We need comprehensive standards of care, we need to make sure families are included as caregivers to provide 24/7 structure and support outside of care appointments. We need individual case managers who look at the big picture for each individual patient 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?

Is an Eating Disorder affecting someone you care about?

 

 

Are you a carer, family member or friend of someone who has an Eating Disorder?

 

Would you like to meet other carers in an informal, supportive setting and learn some practical skills to help your loved one?

 

Saturday, 23^rd February 2013

9.15am – 11.30am

 

Faenol Fawr Country House Hotel

Rhuddlan Road, Bodelwyddan, Denbighshire LL18 5UN

 

This event is for carers, family members or friends of someone affected by an eating disorder. There will be guest speakers, a skills workshop and time to share experiences, thoughts, successes and problems and to obtain support and information. FREE but must book in advance. Click here for more information.

Learning and Applying New Skills to Treat the Most Difficult Eating Disorders
Translating Cutting-edge Eating Disorder Research into Innovative Treatment Approaches

Janet Treasure, PhD, FRCP, Daniel Le Grange, PhD, Lucene Wisniewski, PhD,  Walter Kaye, MD,
Kerri Boutelle, PhD and Leslie Anderson, PhD 

Eating disorders remain one of the most challenging disorders to treat, with an ongoing need to identify exactly what works for all who are affected by the disorder.  Continued understanding and improvement of treatment for these disorders is critical, given that they also remain one of the most lethal disorders.  With the goal of engaging both practitioners and those affected by these disorders, including their families, this conference will bring together experts in the field to present the most innovative approaches for intervening in these most difficult cases.  The conference will include opportunities for dialogue and practical training workshops for practitioners.  We hope you will join us in San Diego this February for this exciting meeting.

Friday: Clinical Training Lectures
Saturday: Practical Training Workshops

10 CE hours offered for MD*, RN*, PhD, PsyD, MFT & LCSW
*CMEs Pending

F.E.A.S.T. is proud to announce it's first Family Guide, "Puzzling Symptoms: Eating Disorders and the Brain, A Family Guide to the Neurobiology of Eating Disorders." This guide was a produced as a collaborative effort between F.E.A.S.T., and the Eating Disorder treatment community. A small printing of the Puzzling Symptoms Guide was distributed, last month, at the 2nd Annual F.E.A.S.T. Conference in Alexandria, VA. Electronic PDF versions of the Puzzling Symptoms Guide are available on the F.E.A.S.T. website, in both booklet and letter format.

	EDITOR IN CHIEF: Walter H. Kaye, M.D. Director, Eating Disorders Program Professor, UCSD Department of Psychiatry
	PRINT EDITOR: Laura Collins Lyster-Mensh, M.S. F.E.A.S.T. Executive Director
	CHAIR: Mary Beth Krohel F.E.A.S.T. Advisory Panel
EDITORS: Kelly L. Klump, Ph.D. Professor and Co-Director of the Michigan State University Twin Registry, Department of Psychology, Michigan State University Richard E. Kreipe, M.D., FAAP, FSAM, FAED Director of the Child and Adolescent Eating Disorder Program University of Rochester Medical Center School of Medicine and Dentistry Dr Sloane Madden, MBBS(Hons), FRANZCP, CAPcert, FAED Child and Adolescent Psychiatrist, Co-Director Eating Disorder Service, Head of Department, Psychological Medicine, The Children’s Hospital at Westmead James E. Mitchell, M.D. President and Scientific Director Professor and Chairman Department of Neuroscience University of North Dakota School of Medicine and Health Sciences University of North Dakota Janet Treasure, Ph.D., M.D. Kings College London , South London and Maudsley NHS Trust

Parent's Choices for Research:

 

• "Is anorexia nervosa an eating disorder? How neurobiology can help us understand the puzzling eating symptoms of anorexia nervosa" Walter H. Kaye MD Ursula F. Bailer MD Megan Klabunde MS Harriet Brown MFA

• Lock, LeGrange, et al, "Randomized Clinical Trial Comparing Family-Based Treatment to Adolescent Focused Individual Therapy for Adolescents with Anorexia Nervosa," Arch Gen Psychiatry 2010 October; 67(10); 1025-1032  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3038846/?tool=pmcentrez 

Parent's Choices for Books:

 

• How To Help Your Teenager Beat An Eating Disorder by Locke and Le Grange

• Decoding Anorexia: How Breakthroughs in Science Offer Hope for Eating Disorders by Carrie Arnold

Parent's Choice for News Articles:

 

• Harriet Brown, "One Spoonful at at Time," New York Times, November 26, 2006 http://www.nytimes.com/2006/11/26/magazine/26anorexia.html?pagewanted=all

Parent's Choices for Blogs:

Parent's Choices for Best Activism:

On Thursday, November 29, 2012, F.E.A.S.T. (Families Empowered and Supporting Treatment of Eating Disorders) and the Eating Disorders Coalition (EDC) coordinated with the office of Senator Tom Harkin to sponsor a Congressional Briefing designed to call attention to the high death rates associated with eating disorders.

Congressional Quarterly Healthbeat News covered the briefing.

Entitled “Ten Percent is NOT Acceptable,” the briefing featured six speakers representing eating disorder clinicians, families, and advocates. Marc Chavez, PhD, of the NIH, presented on the mortality statistics associated with eating disorders, and Dr. Julie O’Toole, of the Kartini clinic, discussed the pediatrician’s potential to save lives through better training leading to early intervention.  Dr. Chavez emphasized how serious these disorders are and corroborated the 10% death rate statistic. He also noted that individuals with anorexia have a 31 times higher likelihood of dying from suicide than their healthy peers.

Parent Amy Snyder spoke about her experiences navigating the diagnosis of and treatment options for her seven year old daughter’s eating disorder.  Another parent, Joan Riederer, spoke about how despite many difficult years of hard work and continued treatment, her daughter Erin eventually lost her life to anorexia in 2010, at the age of twenty-eight.

Laura Collins, Executive Director of F.E.A.S.T., spoke about the powerful role families can play in effective treatment, and shared her vision that this will be the last generation to be told their child has a one in ten chance of dying from their eating disorder.  Jeanine Cogan, Policy Director of the EDC closed the briefing with her remarks on how Congress can address the problems that lead to ineffective care and the unacceptably high death rate for eating disorders by supporting the FREED Act which includes provisions for better education, training and research for eating disorders. 

F.E.A.S.T. Announces LIVESTREAM Coverage for

 

 

"There's No Place like Home: Eating Disorders and the Family" 

2nd Annual Conference

November 30-December 1, 2012. Alexandria, VA, USA 

 

 

We know that many of our members cannot travel to attend the F.E.A.S.T. 2012 Parent & Caregiver's Conference in Alexandria, Virginia, US. For this reason, F.E.A.S.T. has arranged to broadcast this conference LIVE on a Pay-per-View basis, with no advertisements. After the conference, the video segments will convert to a Pay-on-Demand format.

 

How do I watch the Alexandria Conference?

 

To watch the Alexandria Conference you will need to sign in to Ustream and purchase tickets for the events. (See sign up instructions below) You can choose to purchase any or all of the following four segments:

• Friday Morning, 11/30/12, 9:00am to Noon EST (UTC-5)  $7.00

• 9:00am Welcome by Laura Collins, Executive Director F.E.A.S.T.
• 9:15am  "Mental Health and the Media," Jeff Bell Keynote Speaker
• 10:00am "The Evolution of the Field of Eating Disorders: Patient, Parents and Professionals" Craig Johnson, PhD, FAED CEDS, Chief Clinical Officer, Eating Recovery Center, Denver, US  
• 11:15am Parent and Patient Panel Discussion

• Friday Afternoon, 11/30/12 1:30pm to 2:30pm EST (UTC-5)  $2.50

• 1:30pm "A Historical Perspective: The Media, Eating Disorders and You," Carolyn Costin, MA, MED, MFT, Founder and Executive Director of Monte Nido and Affiliates

• Saturday Morning, 12/1/12, 9:00am to Noon EST (UTC-5)  $7.00

• 9:00am "Paying for Treatment, How Does Insurance Work?" Lisa S. Kantor, Kantor and Kantor
• 9:45am "WHY is Food Medicine?" Debra Katzman, MD, FRCP(C), Professor of Paediatrics in the Division of Adolescent Medicine, Department of Paediatrics and the University of Toronto
• 11:00am "History and Hopes for the Future of Collaboration in the Field of Eating Disorders" Mary Beth Krohel, Founding member and Advisor of F.E.A.S.T., Chair of the F.E.A.S.T. Family Guide Task Force , Laura Collins, Executive Director of F.E.A.S.T. 

• Saturday Afternoon, 12/1/12 1:30pm to 5:00pm EST (UTC-5)  $3.50

• 1:30pm "Insights from Fathers" Panel Discussion
• 2:15pm "What IS Evidence- based Treatment and How Do I Know I'm Getting It?"  Mark Warren, MD, MPH, FAED Clinical Psychiatrist and Medical Director, co-founder Cleveland Center for Eating Disorders
• 4:30pm Closing Session: Awards and Closing Remarks

• How do I sign up?

1.    Follow this link to the "F.E.A.S.T Conference 2012: No Place Like Home" USTREAM Channel.

2.    Create a USTREAM account (more anonymous) or login with Facebook. Please note that your comments while logged in with Facebook will post to your facebook page.

3.    Scroll down to "Upcoming Shows" and select the segments you would like to view.

4.    Pay for your tickets with Paypal or a credit card.

5.    On the day of the show, log in to your USTREAM account, return to the F.E.A.S.T. channel and watch the event.

• More Information:

• Live Pay-per-View segments will convert to View-on-Demand segments after the live event. Your purchase is good for PPV and VOD, so you need not be available to view the event live.
• Half of your ticket purchase price will go directly to F.E.A.S.T. to help cover the audio-visual costs of producing the broadcast.
• You may make Facebook and Twitter comments directly from the event page while viewing the event.
• Social chat with other viewers of the event will also be enabled.
• Refunds will be made by Ustream ONLY if the event is cancelled.
• International members? Try the World Clock Converter
• More Questions? Visit the Ustream pay-per-view FAQ.

  

This conference accepts no industry funding, and has no corporate sponsor.

 

Visit our Website Conference Page

UCSD Welcomes Families at their February 2013 Conference:

Learning and Applying New Skills to Treat the Most Difficult Eating Disorders
Translating Cutting-edge Eating Disorder Research into Innovative Treatment Approaches

Fordham University is currently recruiting adolescents for the following research study:

“Predictors of Anorexia Nervosa Preoccupation and Ritual Severity”

Are you an adolescent who has received professional treatment for Anorexia Nervosa?

If so, I would like to invite you to consider participating in an anonymous study that examines factors that may be related to Anorexia Nervosa severity. I hope that the results of this study will help treatment providers better identify early warning signs of Anorexia Nervosa and create more tailored treatment plans.

To be eligible for this study, you must be (1) between the ages of 12 and 18; (2) have previously had or currently be receiving professional treatment for Anorexia Nervosa; and (3) have parental permission to participate.

Participation will involve completing a series of online questionnaires, which will take approximately 30 minutes. You will not be asked to provide your name at any time. Publications or presentations about the research will not include individual responses, only summary data on all participants. If you would like to participate in this online study, please visit: https://www.surveymonkey.com/s/M65K9GC

*Participants have a chance to win a $50 Amazon gift card by participating in this study!