F.E.A.S.T. 
Families Empowered and Supporting Treatment of Eating Disorders 
Member Newsletter - November, 2013
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Dear F.E.A.S.T. Member:

Thank you! You are receiving this newsletter because you are one of our 3000+ members including families, clinicians, patients, and organizations from more than 40 countries. We depend on you and appreciate your continuing support and interest in F.E.A.S.T.

Year-End Reminder:
F.E.A.S.T. is an ALL-VOLUNTEER 501(c)3 non-profit organization. F.E.A.S.T. membership is FREE, but we rely on individual donations* to support our programs and services. Please think of F.E.A.S.T. when planning your year-end charitable giving. 

F.E.A.S.T. Services include:

Direct Caregiver Support:

"Around the Dinner Table" Moderated Forum, Caregiver Conferences with professional speakers, Local Member Connections Forum, Caregiver Support Phone Line 

Outreach & Advocacy:

Representing Caregiver Concerns at Professional ED Conferences, Exhibit Tables at conferences and eventsSupport for Advocacy Task Forces in Australia, Canada, United Kingdom, and the US Pacific Northwest, Collaboration on special events and projects with other ED advocacy organizations, Blogging and sharing current ED news and research on social media

Educational Resources:

Extensive Informational Website, Comprehensive Eating Disorder Glossary, Family Guide Series of Educational Booklets, printed F.E.A.S.T. brochures for clinics, Online videos of Caregiver Conference talks

 

*F.E.A.S.T. is dedicated to remaining independent and family-focused. For this reason, it is our policy not to accept donations, advertisements, or sponsorships from eating disorder treatment providers as well as other business concerns who sell to or provide treatment services to families.

Registration is OPEN for F.E.A.S.T.'s 2014 Conference!
Connecting the Dots: 
Expanding the Knowledge Base and Extending the Circle of Care
Early Bird Rates end December 1, 2013
 
You are invited to attend F.E.A.S.T.'s 3rd Annual U.S. Conference in Dallas, Texas on 
January 31 -February 1, 2014.  The conference is a fantastic opportunity for current and future F.E.A.S.T. members to meet face-to-face, support each other and interact with eating disorder experts and researchers. Our conferences are designed to be a safe place for caregivers to learn about current research, share their knowledge and experiences, and to take a break from the stress of caregiving. Professionals and other interested parties are welcome to attend.
 
We are beginning a first-come, first-serve waiting list for Caregiver Scholarships to cover registration costs for family members who would otherwise not be able to attend. Please contact F.E.A.S.T. at [email protected] if you are interested. Others wishing to donate to our scholarship fund should visit our donation page.
 
In addition to the confirmed speakers listed below, we are planning:
  • An "Ask a Caregiver" Webinar for clinicians interested in FBT in coordination with the AED FBT special interest group
  • A Panel Discussions on Prevention: Different Perscpectives
  • Parent workshops on: self-care, re-feeding techniques and how to effectively educate and advocate while telling your family's story.
  • Volunteer training session

Speakers:

 

Keynote Speaker: Laura Hill, Ph.D.

President/CEO/CCO, Center for Balanced Living, Worthington, OH

"Eating disorders from the Inside Out"

  

Carolyn Becker, Ph.D.

Professor of Clinical Psychology, Trinity University, San Antonio, TX

"Prevention of Eating Disorders: Optimism and Caution"

 

Lucene Wisniewski, Ph.D.

Clinical Director/Co-Founder,Center For Eating Disorders, Cleveland OH

Topic: Using DBT to treat Eating Disorders

 

Julie O'Toole, M.D.

Founder & Medical Director, Kartini Clinic, Portland, OR

Topic: State and Weight

 

Kerri Boutelle, Ph.D.

Associate Professor of Pediatrics and Psychiatry, UCSD Eating Disorders Program, San Diego, CA

Topic: FBT for Treating Eating Disorders

  

Laura Collins

Founder & Policy Director, F.E.A.S.T.

"An Advocate's Vision for a Complete Spectrum of Care"

 

Click here for more details!

  

 

Testimonials from former F.E.A.S.T. conference-goers:
2012 "Ruby Slipper" Party
"I was able to go last minute and it was an experience that stayed with me for a long time. It was wonderful to meet up with the folks who helped me get my d weight restored. I was able to hugs the folks who answered my questions time after time. Having a badge with real name/forum name was a great experience! I also met several people who weren't on the forum but had a child with an ed and were interested. I still communicate with one couple from the conference on Facebook almost daily."

 

"I loved hearing every speaker and meeting so many of my heroes.
Whoever hasn't been, please consider getting there this year. It is the most uplifting and empowering experience.
Plus learning from all the best - is invaluable."

 

"I wholeheartedly recommend that everyone who has a chance go to a FEAST conference. I've been to both conferences and truly was an amazing experience both times. "

  

"At the meeting I got to talk with clinicians, experienced as well as just starting out (especially interesting- the young clinicians were so enthusiastic and so eager to hear from us parents!)  I got to meet inspiring recovered adult children and their families. That's something we do not get to experience on the forum. If you live near Dallas, you have no excuse not to attend, so go for it! You will not regret it! "

 

"I flew across the country last year to attend the conference and it was an amazing experience to be with a community of parents who understand and are going through similar experiences. I also enjoyed putting forum names to real names (sometimes just first names, sometimes first and last names) and faces, and thanking parents who were such a help to me on ATDT."

 

"The FEAST conference last year in Nottingham! UK changed my life! This has been the single most helpful thing I have done since my D was diagnosed and the help and support just keeps coming!"

F.E.A.S.T. Supports Genetic Research for Eating Disorders
Sponsor: University of North Carolina, Chapel Hill
Only funded in the USA and Australia.
AN25K Challenge
An effort led by Professor Cindy Bulik of The UNC Center for Excellence for Eating Disorders, to add to the ANGI totals to reach a total of 25,000 DNA samples around the world.
A collaborative effort of F.E.A.S.T., B-eat, and King College London to collect DNA samples for AN25K from the UK, in honor of eating disorder advocate, Charlotte Bevin.
Featured Article 
Finding Better Genes:The Anorexia Nervosa Genetics Initiative
By Carrie Arnold (reprinted with permission)
 
Recently, the University of North Carolina Eating Disorders Center announced the beginning of ANGI: the Anorexia Nervosa Genetics Initiative. The goal is to gain a better understanding of the genes involved in AN.
 
When I heard this announcement, I immediately wanted to know more. So I got in touch with lead investigator Cynthia Bulik and project coordinator, Laura Thornton, who told me more about ANGI and what it means to the research community and those of us with eating disorders. 

 

1) So what is ANGI? Why do we need it?

 

ANGI stands for the Anorexia Nervosa Genetics Initiative. It's an international collaborative effort aimed at identifying genes that increase risk for anorexia nervosa and includes researchers from the United States, Australia, Sweden, and Denmark.

 

We know anorexia is characterized by dangerously low body weight and can be deadly. It affects about one out of every 100 people, particularly girls and women, but we don't know why. Because we do not have a full understanding of anorexia's etiology, it is difficult to develop novel treatments. We think that by discovering which genes increase risk for anorexia we'll be better able to understand why it develops, target prevention efforts, and develop new treatments. But we need help! To unlock the genetics of anorexia we need 16,000 people to participate, both people with and without a history of anorexia.

 

2) What types of questions do you hope ANGI answers?

 

The first goal of ANGI is to identify areas in the genome that contribute to the risk for anorexia nervosa.  This is a huge undertaking in and of itself!  Once we discover those genes, we can begin to figure out a lot about the biology of anorexia by examining the ways these genes interact with each other and with the environment.  We can also focus on the complicated ways these genes get expressed across the lifespan and evaluate if there are critical periods of time that we need to focus our intervention.

 

3) Why do you need so many participants?

 

It boils down to statistics.  When you're looking at so many genes all at the same time, there's a likelihood that you might find one that appears to be statistically related but really it's just due to chance.  So, large numbers of people are needed in this study to ensure that the associations discovered between genes and the disease are, in fact, true associations. The more participants we can get around the world, the more likely we will yield results. Schizophrenia was in a similar state as anorexia about 6 years ago and, as they increased their sample size, they have been identifying more and more gene variants that contribute to that disorder. It is an exciting, if not transformational time, for the field and it is time for anorexia nervosa to join this exciting tide.

 

4) One of the many comments I get from people is that they have a hard time believing that anorexia nervosa (or EDs in general) have genetic influences because there's no "anorexia gene." Can you explain a bit more about what we know about anorexia nervosa genetics and why we don't need an "anorexia gene"?

 

Over the last 30 years, a number of studies have demonstrated over and over again that anorexia is heritable.  For example, family studies show that risk to first-degree relatives of those with anorexia is dramatically elevated compared with the risk to the general population. That means that if you have an immediate family member with anorexia, like your mother, your brother, or your sister, that your risk of also having anorexia is higher.  Twin studies are another way to estimate the genetic risk for eating disorders.  In a twin, study identical twins (who share 100% of their genes) are compared with fraternal twins (who share 50% of their genes).  If both members of an identical twin pair are more likely to have anorexia (be concordant) than both members of a fraternal twin pair, we can assume that genetic factors are influencing that outcome.  Using these data, we estimate that the heritability of anorexia is over 60%. Lastly, studies exploring sociocultural theories have not been able to explain the fact that anorexia remains rare in cultures with a thin ideal.

 

So, why don't we need an "anorexia gene?" Psychiatric illnesses are complex and are influenced by many genes, maybe even hundreds, each working together and each with a small effect.  However, if you put them together, along with environmental factors, they can increase your risk for the disease significantly. The Human Genome Project and advances in computer processing speed have moved the field of genetics forward and we can now look at the whole genome, which is amazing!

 

5) Can better genetic information lead to better treatments? If so, how? 

 

It's not going to happen overnight, but certainly better genetic information can eventually lead to better treatments. Genetic information will help us know who is at risk for developing anorexia nervosa and help us with prevention and early identification.  This is a critical first step in understanding the biology of anorexia nervosa. It will inform future neuroscience research, the development of medications for anorexia and even help us personalize therapy.  Getting to that place is a very long road but everyone who participates in ANGI is a citizen scientist who will contribute immeasurably to helping children and adults avoid the heartache that anorexia wreaks on families and lives. We can't do it without you.

 

6) What could these results tell us about preventing AN?

 

The results of the study will inform the next research steps. Prevention information is much further down the line, but each step we take is progress. Once we have identified variants, it may be possible to create a genetic risk profile that may help us understand who (genetically) is at greater risk for developing anorexia.

 

7) If people want to participate, what do they need to know? What about people (like me!) who want to participate but don't live near a clinical center?

 

In the United States, you have to be a girl or woman who at least 12 years of age to participate.  The first step is to speak with one of the researchers about ANGI (send an email to [email protected]). We will give you a brief overview of ANGI and review the consent required to participate. The consent form is a document that explains everything about ANGI and covers the benefits and risks of participating.  After that, we'll invite you to fill out an online survey (15-30 minutes) and submit a blood sample. If you do not live near North Carolina and can't come to University of North Carolina, we'll send you a package with detailed directions on how to send your blood sample. You can get your blood drawn at your local doctor's office or lab, wherever you feel most comfortable. The box with your blood is then shipped back via FedEx with prepaid shipping. If your doctor's office charges you to take your blood, just keep the receipt and we'll send you a check to reimburse you for the cost of the blood draw. Once we get the blood sample, we'll also send you a $25 Amazon.com gift card to say thank you!

 

If you live in Australia, the Queensland Institute for Medical Research and Flinders University are taking the lead.

 

If you live in Sweden, you can contact one of the quality registers, RIKS�T or STEPWISE, to get more information.

____________________________________________________

Carrie Arnold describes herself as an ex-anorexic turned science writer.  She  also is the author of Decoding Anorexia.  Learn more about Carrie at www.edbites.com

Charlotte's Helix Update
Charlotte's Helix is an international collaboration seeking to bring the AN25K genetics initiative to the UK, in honor of the eating disorder advocacy work of Charlotte Bevan.

The goal of Charlotte's Helix is to add at least 1,000 DNA samples from individuals with a lifetime history of anorexia nervosa in the UK to this international genetics initiative. Under the direction of Professor Cynthia Bulik, AN25K has the ambitious goal of collecting 25,000 DNA samples in order to "crack the code" that makes some people predisposed to an eating disorder. 
 

Every dollar, pound, euro... is welcome and needed. Laura Lyster Mensh Collins, F.E.A.S.T. Policy Director, donated her birthday to the Helix, asking her friends and families to give to the project instead of to her. Dozens of others around the world have joined her, sending video greetings and photos with their pledges.

Join friends and supporters around the world who have donated their next birthday to Charlotte.

F.E.A.S.T. has agreed to collect funds for the Helix. Donate online or by sending a check to F.E.A.S.T. at P.O. Box 11608, Milwaukee, WI, USA 53211, designating the Helix fund.

A Touching Letter to the ATDT Forum

Dear unknown friends,

I am a young woman in recovery from anorexia, a condition I have battled for more than ten years. I discovered this Forum {Around the Dinner Table} during my recent stay in hospital. It has made all the difference for my family.

I have never understood why my mother cries. I have never been able to see what she sees in me. I have never truly grasped the impact of my behaviour on those around me. You have shown me why I need to get well.

I was diagnosed in the days when parents took the blame, and children were taken away for treatment. I came out of that treatment with no idea how to live, and no desire to find out. If my mother had not intervened - against all the 'expert' advice - I would not be alive today.

Perhaps I did not see it before I found your Forum. But today I know that she gave me life twice - once, when she brought me into the world, and again when she brought the world back to me.

I know all your children will say the same one day.

The only thing stronger than anorexia is your unconditional love. God bless you for your courage, and may He strengthen you for the battles ahead. You are heroes in my eyes.

Yours in solidarity,

J.B. 

Volunteers Needed:

Parent Mentors:

Do you remember the first time you felt that, FINALLY you were talking to someone who UNDERSTOOD - someone who knew exactly what you were going through because they had already been there? Do you remember that feeling of HOPE and RELIEF to know that recovery was possible and that you could play a role to make it happen?

 

F.E.A.S.T. is looking for experienced caregivers to speak to new F.E.A.S.T. and Forum members by phone in order to welcome them to our community, give them hope, lead them to resources, and to simply be that voice on the other end of the phone who listens and understands.

 

This is a volunteer role that requires you to call back caregivers who leave messages on F.E.A.S.T.'s Parent Support Line. Volunteers will get a notification by email when a caller leaves a message and F.E.A.S.T. will provide business Skype calling accounts for returning these calls. 


F.E.A.S.T. will also provide a set of guidelines for volunteers and initial coaching for how to be an effective mentor and F.E.A.S.T. representative. Calls can be made at your convenience or forwarded to another volunteer 
 
Interested in paying it forward? Please contact us at [email protected].
More F.E.A.S.T. News
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Contact F.E.A.S.T.PhoneNumbers

International Phone Numbers:

US Toll Free: (855) 50-FEAST (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.)

 

Phone Extensions: 
100 General Information 
101 Executive Director, Leah Dean 
102 Policy Director, Laura Collins 
200 Caregiver's Support Line 
301 PNW Task Force 

 

Mailing address: 

P.O. Box 11608 Milwaukee, Wisconsin 53211 USA

If you like what we do...please consider making a donation to F.E.A.S.T. 
Click on the DONATE button, 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.)
In This Issue....
Year-End Reminder
REGISTER for our 2014 Conference!
F.E.A.S.T. Conference Details & Testimonials
F.E.A.S.T. Supports Genetic Research for Eating Disorders
Feature Article, "Finding Better Genes" by F.E.A.S.T. Advisor Carrie Arnold
Charlotte's Helix Update
A Touching Letter
Volunteers Needed!
Stay in Touch
From the Executive Director's Desk
F.E.A.S.T. 2013 Magic Plate Award
Canadian Task Force News
Australian Task Force News
UK Task Force News
U.S. Pacific Northwest Task Force News
  Leah Headshot
From the
Executive Director's Desk


Leah Dean, F.E.A.S.T

As executive director, one of my jobs is to handle donations for F.E.A.S.T. All of our donations come from individuals, mostly in amounts ranging from $15 to $1000. Many come with notes of thanks, or sadly, as memorials to loved ones who were unable to beat this illness. 

Over the past few months, I was touched to receive some donations that reminded me how special the F.E.A.S.T. community is. One was a check for an unusual amount ($86) which turned out to be money that a patient's sister saved from her allowance and sent to us with a note thanking F.E.A.S.T. for helping her family deal with her brother's eating disorder. 

I also received several donations from family friends in honor of a F.E.A.S.T. member's birthday and others in honor of a recovered patient's wedding. I want to send a personal "Thank You" to those donors, but also to the F.E.A.S.T. members who thought of us when celebrating the personal milestones of their lives!

 

As the end of 2013 approaches, I find myself in the middle of a variety of tasks that should position F.E.A.S.T. for a stronger 2014 and beyond. The bigger projects on my desk at the moment are:

  • F.E.A.ST.'s 2014 budget and 2013 year end finacial reporting.
  • Coordinating edits from eating disorder experts to create a second draft of F.E.A.S.T.'s next Family Guide booklet. (We are currently on schedule to release this new document on evaluating and choosing treatment at our upcoming Dallas conference.)
  • Set up and administration of F.E.A.S.T.'s new member management database and member services platform. 
  • Ongoing Conference planning, publicity and processing conference registration. 
  • Collecting and processing donations for the Charlotte's Helix Genetics Initiative to be send on the to the AN25K fund. 

I encourage everyone reading this to consider attending our next conference in Dallas, TX.   Dallas is a major airline hub with many direct and international flights coming in each day. The weather should also be quite comfortable in February, especially for those who need an escape from the northern US winter!

 

If you cannot attend, please consider donating to our Conference Audio Visual Fund. We are hoping to livestream the conference and edit and produce videos of the talks for our website. We have tried to do this in the past with all volunteer efforts, but have found that we really could use some professional help to create a glitch free, quality production for our members.

 

Thank you once again to our volunteer newsletter editor, Jennifer, for all her work putting this newsletter together and all the other amazing behind the scenes volunteers who keep this organization going! I am grateful for your generous commitment of time and energy that allows F.E.A.S.T. to continue with it's mission of supporting and empowering caregivers.

 

Leah Dean

[email protected]

 

 

 The 2013 "Magic Plate" Award goes to Charlotte Bevan!
Since 2011, F.E.A.S.T. has chosen a recipient of our Annual "Magic Plate" Award for excellence in family-based advocacy to advance the field of eating disorders treatment and research.
The recipients of this award are F.E.A.S.T. members who have volunteered their time and energy to educate and support caregivers, to challenge outdated and ineffective treatment methods, and to work collaboratively with the professional community to find new ways to ease suffering and improve outcomes for patients with eating disorders.
Canadian Task Force News 

 

Task Force members have been busy the past several months. Members participated in planning meetings and attended the first meeting of the National Eating Disorders Foundation of Canada which took place in October.  This meeting included clinicians, parent advocates and federal Members of Parliament from across Canada. They also participated in planning meetings for provincial lobby day in Ontario scheduled to take place in March, 2014 and clinical contacts were provided to parents in western and eastern parts of the country.   In Alberta, journalists were connected with parent advocates and information. In Ontario, members met with clinician Dr. Adele LaFrance to introduce the F.E.A.S.T. Canada Task Force and discuss new treatments being developed. As well, members provided feedback to clinician on Children's Hospital of Eastern Ontario (CHEO) waitlist intervention family module and created a document entitled "Eating Disorders - Tips for Educators from the Parent's Perspective" for the Ontario Ministry of Education ASSIST mental health initiative.

 

More information on the Canadian Taskforce can be found on the F.E.A.S.T. website

 

 

Australian Task Force News
Since the At Home with Eating Disorders Conference in May, the Australian Taskforce has been pretty quiet. However, they have done the following:
  •   Enabled the videos of the conference sessions to be made available to all through the website - these are a fantastic resource and I strongly recommend people download them. You can choose to download at no cost or to donate to the next conference. 
  •  Finalised the finances for the conference with a reasonable and surprising profit being made. This will enable us to provide seed funding for the next conference in early 2015 and will ensure a lot less stress on the committee than starting with zero dollars! 
  •  Collated the evaluations which were amazing, emotional and full of fantastic suggestions for the next conference.
  • Presented the conference activity and outcomes at a concurrent session of the Australian and New Zealand Academy for Eating Disorders, which was very well received.

In her capacity as a F.E.A.S.T. Board member, Belinda Caldwell, meets with the Butterfly Foundation regularly, not the least of all to plan for the next conference. She has been asked to present at a couple of forums/conferences on a family perspective of FBT, including a workshop for child and adolescent psychiatrists 

 

Belinda is keen to keep the Taskforce up and running as an entity which has discussions about our Australian context and issues. If you would like to volunteer, please email Belinda.

 UK Task Force News

 

 

Task force member Charlotte Bevan has had the opportunity to speak about the reaction of parents to Professor Bryan Lask's interview on the BBC's Inside Health. This has provided the opportunity to publicize Charlotte's Helix. Charlotte has also been working with several families to get care for their children, and has become something of an expert in NHS complaints systems. We are all very grateful to Charlotte and others on her team who have put so much into trying to get decent care for all.

Helen Missen's work in Wales continues with her petition having been read and debated in parliament. Some members will be attending a conference at the Maudsley Hospital on 22nd November and in one of the most positive and cheering moves of all, parents are starting to meet up with each other to provide support and understanding on the ground, both in small groups of two or three and at more formal lunches arranged via F.E.A.S.T.'s Around the Dinner Table forum.

 

 For information on the UK Task Force, please visit the F.E.A.S.T. website.

     

U.S.Pacific Northwest

Task Force News

 

F.E.A.S.T. PNW Task Force was invited to present at the monthly educational meeting at the Adolescent Medicine Clinic (AMC), an outpatient clinic affiliated with Seattle Children's Hospital. The physicians, dieticians and social workers at the AMC handle many eating disorder cases in the Puget Sound area. Member, Colleen Wise, presented "Eating Disorders from a Parent's Perspective," emphasizing the importance of peer-to-peer support for parents, and teamwork and communication between parents and providers. Four other member of the group answered questions during a parent panel at the end of the presentation. Approximately 45 professionals attended the meeting. It was exciting to see the level of interest in the room! The presentation was slated to last one hour, but many people gave up their break to continue to ask questions and talk with F.E.A.S.T. PNW members, and the conversations spilled out into the hall afterward.

 

The group would like to help Seattle Children's Hospital update their website information and offer feedback on their appointment protocols.   On their part, the doctors at AMC are thrilled to be able to refer parents to F.E.A.S.T. PNW for support. We are excited to liaise with Children's and AMC to help improve treatment protocols for kids with eating disorders. Together we can improve outcomes for ED sufferers in the Pacific Northwest!

 

If you would like to present to your local professionals or other groups, you are welcome to contact Colleen for a copy of the PowerPoint presentation at [email protected].

 

Our parent support group continues to meet at Delfino's Pizza in U Village on the second Thursday of each month from noon - 2:00 p.m. All are welcome!

 

Daryl coordinates a parent support group in Bellingham. If you are interested, please contact her at [email protected].

 

We are looking forward to starting a parent support group in the South Sound (Puyallup/Tacoma) area. If anyone is interested, please contact Colleen at [email protected].