NIED’s Wendy Preskow to be the next Lived Experience Conversation Series guest speaker.
On January 30, 2020, NIED founder and president, Wendy Preskow, will give her lived experience insights on the topic:
Family Life and Living with an Eating Disorder: One Caregiver’s Journey from Awareness to Action.
Wendy will be in conversation with Dr. Linda Booij, associate professor in the Department of Psychology and Concordia University Research Chair in Eating Disorders. Dr. Booij is also co-director of the Centre for Clinical Research in Health (CCRH), who host the Lived Experience Conversation Series.
The event will be sponsored by the Health Initiative at Concordia University and held at the University’s Loyola Chapel.
Full details can be found here
National Initiative for Eating Disorders (NIED) announces Canada’s first Strategy dedicated to improving outcomes related to Eating Disorders
(November 7, 2019 – Toronto, Ontario) – NIED joins three national not-for-profits in releasing Canada’s first strategy aimed at improving outcomes for people affected by Eating Disorders (EDs) over the next 10 years.
Following the publication of a report entitled Eating Disorders among Girls and Women in Canada by the House of Commons Standing Committee on the Status of Women on November 17, 2014, four national organizations dedicated to supporting care for and recovery from Eating Disorders came together in 2015 to discuss how to meaningfully improve outcomes for people living with EDs in Canada.
The Canadian Eating Disorders Strategy: 2019-2029 is the result of extensive work and listening carefully to stakeholders across Canada in 2016, 2017, 2018 and 2019, through direct conversations and surveys targeted at the general public, professionals, caregivers and people with lived experience.
The Strategy contains 50 recommendations under six pillars of activity: 1) Prevention; 2) Public Education and Awareness; 3) Treatment; 4) Caregiver Support; 5) Training; and 6) Research.
Wendy Preskow, President of NIED, remarked, “When we started this journey seven years ago as a national not-for-profit, we could never imagined stakeholders from across Canada coming together to provide insights about what has worked well for them or their loved ones; what challenges they experienced in trying to access evidence-based and evidence-informed care; and what different stakeholders need to do to improve outcomes for people at-risk and people recovering from an Eating Disorder or related mental illness. We are extremely grateful for the input we have received to this Strategy, from hundreds of stakeholders over the last five years”.
In addition to providing a snapshot of the current state of Eating Disorders in Canada, the Strategy also aims to respond to what we heard from a wide-range of stakeholders, including people in recovery, caregivers, family members, professionals and providers, each of whom identified gaps in research, education, care and support about and for Eating Disorders in Canada.
NIED recognizes that the publication of this Strategy is only a first, but crucial step to identifying practical ways in which diverse stakeholders can work together to leverage recent, historic investments in mental health and mental illness by all levels of government. NIED expects that the implementation of the Strategy’s recommendations, over time, will improve health care, social services and supports for individuals and will lead to better methods of preventing illness, promoting better health and supporting recovery from Eating Disorders.
Mark Ferdinand, Executive Director of NIED, added, “This 10-year Strategy provides us all with a blueprint to co-develop local as well as pan-Canadian actions that will make a difference in so many people’s lives: from professionals who want to increase their confidence and knowledge about how to best prevent or treat an Eating Disorder; to administrators and policy makers who have been updating national mental health and primary healthcare standards aimed at improving communication between care teams and family members.”
NIED will use this first Strategy to expand its dialogue with stakeholders and refine specific recommendations prior to their implementation. NIED will also develop action plans over the next three years aimed at implementing select recommendations in support of NIED’s educational mission.
NIED uses education to help people cope with the effects of Eating Disorders. We develop and deliver educational, informational and other recovery-oriented resources related to the prevention and treatment of Eating Disorders and related mental illnesses. Through education, NIED highlights better practices in prevention, health promotion, and treatment, and empowers caregivers, healthcare professionals, and social services providers support recovery from Eating Disorders.
To consult the Strategy, please visit http://nied.ca/canadian-eating-disorders-strategy/
For further information about the Strategy, please contact:
Chairman and Executive Director,
National Initiative for Eating Disorders
 Standing Committee on the Status of Women (2014), Eating Disorders among Girls and Women in Canada. Accessed September 10, 2019. https://www.ourcommons.ca/DocumentViewer/en/41-2/FEWO/report-4.
Early registration open for first-ever three-day virtual conference on Body Image and Eating Disorders
(July 3, 2019 – Toronto) Non-profit organizations Body Brave and the National Initiative for Eating Disorders (NIED) have teamed up to present Body Peace 2019 – a first-of-its kind body image and eating disorders virtual conference taking place from October 4 to 6 this year. The theme for this year’s conference is Lived Experience is Evidence Too. Early bird registration for the conference is NOW open until July 30.
The Body Peace 2019 conference, hosted on the virtual platform Zoom, is designed to challenge barriers, embolden conversation, and equip people with the tools needed to create lasting change in their lives.
The conference will feature accredited training sessions for healthcare professionals including dietitians, family physicians and social workers, panel discussions, keynote speakers, live chats and much more. The three areas of primary focus are innovation, representation, and collaboration. The Innovation segment will highlight innovative clinical and non-clinical approaches, fresh ideas, and new perspectives in the realm of body image and disordered eating. The Representation module will feature the powerful and diverse voices of those with lived experience, caregivers, and clinicians. Day three will focus on Collaboration and the myriad ways we can all collaborate to break down stigma and promote empowering approaches to healing. Many topics will be discussed over the three days that range from “Eating Disorders and sexuality”, “treatment for adults”, disabilities and Eating Disorders”, “trauma and shame” and “Eating Disorder hell to recovered and well”.
Body Peace is a non-profit conference. All proceeds from ticket sales go directly to meeting conference costs and to supporting those struggling with eating disorders through the work of Body Brave and NIED.
All tickets give participants access to live and pre-recorded sessions from Oct 4-6. Once you register, you will receive a link with all the information about how to access the conference and reminder emails. To register for Body Peace conference and for more info and prices, please visit https://livingbodybrave.com/bodypeace.
Body Brave’s mission is to plan and deliver innovative local and national services that address the major gaps in resources for eating disorders, in collaboration with those with lived experience and our community partners. Body Brave also works to create a bold national recovery-focused, inclusive community, committed to body liberation as well as raising awareness and reducing stigma around disordered eating and/or eating disorders.
NIED is the voice for Canadian families, caregivers, and individuals who are affected by Eating Disorders and other co-morbid and concurrent diagnoses. NIED helps caregivers, patients, and practitioners fill gaps in care through education and by highlighting better practices in prevention, health promotion, and treatment.
For more information, contact:
Lynne Koss (she/her)
National Initiative for Eating Disorders – NIED
Body Peace Conference Coordinator
Live Brave Live Full Live Wise
Susan Minuk speaks with Wendy Preskow about the National Initiative for Eating Disorders.
Wendy Preskow: Educating about Eating Disorders.
Of all the mental illnesses, the medical world recognizes eating disorders as the most deadly. Yet in our society, eating disorders are largely misunderstood. Wendy Preskow is the voice for Canadian families, caregivers and individuals who have been affected by eating disorders. Preskow spoke to The CJN about the National Initiative For Eating Disorders (NIED), the organization that she co-founded in 2012.
What was the impetus for creating the National Initiative For Eating Disorders?
I have a sick daughter, Amy, who has been suffering for two decades from anorexia and bulimia. Imagine someone with a chronological age of 34 with incredible potential, but with a seven year old’s lack of social and emotional independence and the osteoporosis of a senior. In high school, Amy would ask herself, “Who am I?” There was never abuse or trauma. She was never an overweight child. But she always felt she was never enough.
We found there were a lack of resources and an incredible lack of awareness and understanding that an eating disorder is a mental illness. What we came to realize was how many thousands and thousands of other families there are across the country in the same or worse situations than us. I could not just sit back. I had to take action.
For the very first time in the eating disorders landscape in Canada, NIED was the catalyst to bring multiple stakeholders together in Winnipeg in September 2016. Four Canadian national organizations united to formulate a national eating disorder strategy, which will include six pillars: treatment, training, education, prevention, caregivers and research. This strategy will be launched later this year.
An estimated one million Canadians are struggling with eating disorders. Please explain what an eating disorder is.
There are different types of eating disorders and the most common disorders that people hear about are: anorexia nervosa (starving); bulimia (binging and purging); and binge eating (constant eating). From our daughter’s perspective, anorexia is all about control. Something in her life that she found she could have control over was food. Food is actually a symptom of the disease. All of these disorders are deep psychological and psychiatric illness, in which the food is a symptom of the disease. It manifests in what they do with food – whether they starve, or whether they binge. The binging and the purging is more about wanting to numb the emotions because they get a high from the purging. It’s been said that it’s the same kind of high that somebody would get using cocaine.
Who is at risk of developing an eating disorder?
Anybody can be at risk. The doctors say that 80 per cent is genetics, which loads the gun, and 20 per cent is the environment, which pulls the trigger. If you are predisposed, you can end up being a drug addict or abusing alcohol, or end up with an eating disorder. As Jews, we take care of others who are struggling and cannot help themselves, and who certainly do not choose to live this way.
Statistics indicate that one in 10 people suffering from an eating disorder will die. What are the health consequences of an eating disorder?
Eating disorders are serious mental illnesses associated with significant medical complications that affect every organ of the body. My daughter has osteoporosis in her spine, because of the starving and lack of nutrition. Amy’s iron levels, growth, menstrual cycles and electrolytes are out of balance. There have been frequent visits to the emergency room for fainting.
What is the treatment for eating disorders?
If people are medically unstable, they need to be hospitalized. Once they are medically stable, there are different methods therapists will use, such as dialectical behavioural therapy and family based therapy. There are only 20 residential beds in all of Ontario for anyone over the age of 18. There is no funded residential treatment
centres for adults like there are in the United States, the U.K. and Australia. The goal is to nourish the person so the brain can start functioning again, but it becomes a revolving door, because there are not enough resources to work on an individual basis. Once they are medically stabilized, they need a place to get well and to heal – ideally a residential government-funded, community-based program.
What does recovery look like?
Recovery means so many different things to so many different people. Our daughter has been sick for too long, so for her to be completely free of her eating disorder for the rest of her life, I don’t think will happen. Recovery would mean to be a functional citizen and to be able to be part of society and be included in society, and for her to feel that she can cope in society. Eating disorders often come with depression, anxiety, ADHD and OCD issues. It’s hard to say whether the anxiety came first or the eating disorder.
How important is education, not only for the patient, but the entire family?
The caregivers need help. It’s such a complex, long and lonely illness. NIED has hosted 67 free symposia for the public to attend. They are intended to help families, friends and loved ones understand what they are dealing with and educate those affected by eating disorders. It’s an illness of the brain and families just don’t know which way to turn.
How accessible is it for Canadians suffering from eating disorders to receive timely, comprehensive and specialized treatment?
The provincial costs associated with patients who have anorexia nervosa and are on long-term disability may be as high as $101.7 million a year – 30 times the cost of all provincial specialized eating disorder services. Too many Canadians suffering from eating disorders do not have reasonable access to timely, comprehensive and specialized treatment. There are waiting lists for assessments. If and when they eventually get into treatment, they often have to wait at least four to six months to actually start treatment. If your child is in danger and he or she won’t go to emergency, then you should phone the police.
This interview has been edited and condensed for style and clarity
The National Initiative for Eating Disorders Propels ‘Can’t Afford to Wait’ Message with Generous Donation for Cutting-Edge
(May 28, 2019 – Toronto, Ontario) – The message at this year’s fourth annual World Eating Disorders Action Day on June 2nd is, “Eating Disorders Can’t Afford to Wait,” and the National Initiative for Eating Disorders (NIED) is taking-action now.
To show their support, NIED, a not-for-profit organization has gifted a generous $15,000.00 donation to drive the development of an innovative national e-learning platform aimed at addressing the gaps in the Eating Disorders field. The donation will fund the identification and adaption of existing evidence-based research related to low-intensity, rapid early treatment of Eating Disorders into online education resources aimed at caregivers, primary care providers and individuals recovering from Eating Disorders.
Sonia Kumar-Sequin, Executive Director of Body Brave, a non-profit that offers community treatment and support for those struggling with body image, disordered eating and eating disorders states: “Using technology and innovation, we can drive systemic change in the Eating Disorder world. Virtual approaches, both in healthcare and education spaces, are changing the way our world works. Why shouldn’t we adopt these technologies to change the way Eating Disorders are approached? The time has come for pioneering action. Eating Disorders can’t afford to wait.”
“We all want to have a positive impact,” says Academy for Eating Disorders (AED) president, S. Bryn Austin, “but one of the biggest set of hurdles we face as a community is that, because of myriad problems with healthcare delivery systems around the globe, the majority of people with Eating Disorders — or mental health conditions of any type, for that matter — do not get diagnosed or receive treatment.” AED is a global professional association committed to leadership in eating disorders research, education, treatment, and prevention.
The intent of the donation is to fulfill this need for immediate and accessible training for healthcare professionals and resources for those struggling and their caregivers. In 2014, 70% of doctors reported to receiving five hours or less of Eating Disorder specific training in medical school. Currently, Eating Disorders have the highest mortality rate of all mental illness and the incidence of children with eating disorders is rising at an alarming rate.
The development of the e-learning platform is a collaborative project made up of key stakeholders. In addition to NIED, Body Brave, two community-based organizations (Eating Disorders Nova Scotia and Bridgepoint Centre for Eating Disorders Saskatchewan), a treatment program in Ontario, researchers from Hamilton and Niagara, have pledged their support through commitments to provide content and promote the e-learning platform within their networks.
In the lead up to the release of the e-learning platform, NIED, in collaboration with Body Brave, will be hosting the first-ever virtual Body Image and Eating Disorders Conference, Body Peace, from October 4-6, 2019. The conference will feature presentations from Eating Disorders survivors and professionals. Attendees will also be given the opportunity to preview components of the e-learning platform, such as the “caregiver classroom”. Join over 250 organizations in showing support on World Eating Disorders Action Day. Use social media to engage with us on Facebook, Twitter and Instagram on June 2nd by using the hashtags: #ShowUsYourPurple, #WorldEatingDisordersActionDay, #EatingDisordersCantAffordtoWait and #WeDoActNow2019. Wear purple to show your support, attend workshops and advocate openly for education and treatment.
The National Initiative for Eating Disorders is a not-for-profit organization dedicated to filling the gaps in Eating Disorders care through education. NIED works with caregivers, healthcare professionals and social services to highlight best practices in prevention, health promotion and treatment. To learn more about NIED and Eating Disorders in Canada, visit: https://nied.ca/
Lynne Koss (she/her)
Co-Founder/Vice President National Initiative for Eating Disorders
My Eating Disorder is Not…
NIED offers our heartfelt thanks Madame Sophie Grégoire Trudeau for her ongoing support and encouragement, including this special video message to honour Eating Disorder Awareness Week 2019.
Nine provinces and territories hosting 35 events across Canada for Eating Disorder Awareness Week.
Toronto, Ontario –January 30, 2019 – With an estimated one million Canadians struggling with Eating Disorders, we simply can’t afford to wait in advancing awareness and treatment for Eating Disorders in Canada. Eating Disorders Awareness Week (EDAW), runs annually February 1-7. EDAW urges Canadians to raise awareness of the causes, prevalence and impact of Eating Disorders.
The staggering statistics surrounding this mental illness clearly reflect such need and urgency. One in ten people suffering with an Eating Disorder will die. One in five teenagers are dieting at any given time, increasing the risk of developing an Eating Disorder. Eating Disorders in Canadian children are estimated to be two to four times greater than the incidence of Type 2 Diabetes in such children. Eating Disorders do not discriminate – they can develop in all genders, ages, racial and ethnic identities, sexual orientations and socio-economic backgrounds.
The National Initiative for Eating Disorders (NIED), National Eating Disorder Information Centre (NEDIC), the Canadian Mental Health Association (CMHA), Looking Glass Foundation, and Body Brave have joined forces to develop this year’s campaign: Eating Disorders can’t afford to wait. With millions of Canadians experiencing the devastating impact of Eating Disorders, the funding and treatment of Eating Disorders can no longer be put on hold.
To date, EDAW has been proclaimed in seven provinces, supported by 60+ municipal proclamations. There are over 35 individual events, programs, special ceremonies and discussions taking place in nine provinces and territories. This is all being done to generate greater awareness about the severity and continued escalation of people being affected by Eating Disorders.
EDAW will help affirm the experiences of those affected by an Eating Disorder. The week aims to educate the public about the impact of Eating Disorders, dispel the myths and stigmas associated with them and illuminate the tremendous gaps in funding and services. The ultimate goal is to motivate decision makers in positions of influence to provide, among other things, better and more affordable prevention and treatment options, enhanced training for professionals and greater support for caregivers.
To engage in our #ShowUsYourPurple social media campaign and for a complete listing of events taking place across the country, please visit the EDAW website at www.nedic.ca/EDAW.
Join us February 1 through to February 7th to help shine a light on this debilitating mental illness. Those suffering, and their families, need your support. Please consider donating to one or more of the participating organizations. Your support can make a difference to many lives. We can do better. We must do better.
About the partners behind the Eating Disorders Awareness Week campaign:
National Initiative for Eating Disorders (NIED) is the voice for Canadian families, caregivers, and individuals who are affected by Eating Disorders and other co-morbid and concurrent diagnoses. NIED helps caregivers, patients, and practitioners fill gaps in care through education and by highlighting better practices in prevention, health promotion, and treatment. www.nied.ca
National Eating Disorder Information Centre (NEDIC) operates Canada’s only national Toll-Free Helpline and Instant Chat services providing information on treatment option and/or support to people across Canada either directly or indirectly affected by disordered eating and related concerns. www.nedic.ca
Founded in 1918, the Canadian Mental Health Association (CMHA) is the most established, most extensive community mental health organization in Canada. Through a presence in more than 330 communities across every province, CMHA provides advocacy, programs and resources that help to prevent mental health problems and illnesses, support recovery and resilience, and enable all Canadians to flourish and thrive.
For more information, visit www.cmha.ca
Looking Glass Foundation’s programs and services decrease isolation, instill hope, and sustain recovery for individuals across British Columbia who are impacted by eating disorders: www.lookingglassbc.com
Body Brave delivers innovative local and national services that address the major gaps in resources for eating disorders, in collaboration with those with lived experience and our community partners. www.livingbodybrave.com
For more information, please contact:
Outreach & Education Coordinator, NEDIC
Madame Sophie Grégoire Trudeau’s special video message to attendees of NIED’s Eating Disorders Awareness Week 2018 event on the Hill. Once again, we thank Madame Grégoire Trudeau for her heartfelt and inspiring support.
On February 6, 2018, members of the NIED team attended an event in the Speakers’ Lounge on the Hill to inform, educate and acknowledge Feb 1-7 as Eating Disorders Awareness Week in Canada. The event was hosted by NIED, Deputy Speaker Carol Hughes, MP Michael Levitt, MP Marilyn Gladu and Senator Nancy Greene-Raine. The Speaker of the House of Commons, Geoff Regan, shown here with Alex Macri and Lynne Koss from NIED, graciously opened the Speakers’ Lounge to NIED for the event.
NIED was thrilled to have the following organizations join us:
Hopewell Eating Disorder Centre Ottawa, Alyssa Stevenson Eating Disorder Trust of Manitoba, Health Canada, Mental Health Commission of Canada, Children’s Hospital of Eastern Ontario, The Royal Ottawa, Public Health Ottawa, University Health Network of Toronto, Public Health Agency of Canada, Canadian Mental Health Association, Canadian Association of Social Workers, Canadian Alliance for Mental Illness and Mental Health, Emily Murphy Non Profit Housing Corporation, Ontario Centre of Excellence for Child and Youth Mental Health, and the Youth Services Bureau.
Thank you all for making our 15th visit to the Hill so special, inspiring and memorable!
On November 28, 2017, at the CAMH Difference Makers (Ontario honourees) event, NIED founder Wendy Preskow was introduced as one of 150 Leading Canadians for Mental Health (out of over 3,700 nominees!). An image from the event is on the left (left to right): Lynne Koss, co-founder, NIED, Jim Treliving, Chairman, Boston Pizza and National CoChair, CAMH Difference Makers, Wendy Preskow, founder of NIED and CAMH Difference Maker, Chris Summerville, Executive Director, Manitoba Schizophrenia Society.