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June 09, 2015

Words With Wisniewski: An Initiative to Eliminate Eating Disorders for Good

by Lucene Wisniewski, PhD


By Lucene Wisniewski, chief clinical officer

In April, I had the privilege of attending the 22nd annual International Conference on Eating Disorders in Boston. It's an amazing opportunity to learn about the latest happenings in eating disorder treatment and research to better care for our patients.

One of the event highlights was the keynote address given by Dr. Cynthia Bulik, "Towards an Engaged Science of Eating Disorders: Opening the Doors to the Ivory Tower."

Cindy has been a role model, colleague and friend of mine for 25 years. She was a post-doctoral fellow at the University of Pittsburgh when I was just starting out as a graduate student in clinical psychology and we worked in the same lab. Over the years, I have watched and marveled at her work.

Her plenary discussed the notion of science needing to better engage with academia and the community at large.

To her, effective engagement "requires academic members to become part of the community, and requires community members to become part of the research team."

She said public participation involves two-way communication and collaborative problem solving, and the need for public participation is based on the belief that those who are affected by a decision have a right to be involved in the decision-making progress.

She pointed to the Anorexia Nervosa Genetics Initiative (ANGI) as an example. There are many people who diet, but only a few of them actually develop anorexia. Therefore, we need to be able to understand the genetics of who develops this illness.

The ANGI is the largest, most rigorous genetic study of eating disorders ever conducted. Researchers around the globe are on a mission to collect clinical information and blood samples from more than 8,000 individuals with anorexia nervosa, as well as those without an eating disorder.

The goal of this initiative is to detect genetic variation that contributes to this potentially life-threatening illness and transform our knowledge about the causes to ultimately find a cure.

Dr. Bulik hopes to spread the word, noting social media (via Twitter, Facebook and blogs) can help. She's on a mission to inform people about the study and how they can participate.

photo of dirk miller and mark warren at AED ICED 2015

Right then and there, I pledged that I would commit my next blog post to addressing this issue in an attempt to do my part. And, as I walked to the table to sign up to give blood, I then ran into two other friends and colleagues, Dr. Mark Warren, chief medical officer of The Emily Program, and Dr. Dirk Miller, founder and executive chairman of The Emily Program. As professionals who have recovered from eating disorders, they too wanted to do their part and pledged to donate blood (i.e. their genes) to the project.

And, you can too. If you have suffered from anorexia nervosa at any point in your life, you can help us achieve our goal. Your contribution would entail a brief 30-minute interview and a blood sample. If you have never had anorexia nervosa, you can still contribute and we invite your participation, as well. Participants will receive a $25 Amazon gift card for your contributions.

Only with your participation can we achieve our goal of eliminating this devastating illness once and for all.

About the Author

Lucene Wisniewski, PhD

Lucene Wisniewski, PhD

Lucene Wisniewski, PhD, FAED is Chief Clinical Integrity Officer of The Emily Program and is an Adjunct Assistant Professor of Psychological Sciences at Case Western Reserve University. From 2006-2014, she served as Clinical Director and co-founder of the Cleveland Center for Eating Disorders, a comprehensive eating disorder treatment program. Her research and clinical interests include using empirically founded treatments to inform clinical programs. She provides workshops on the CBT and DBT treatment of eating disorders internationally and publishes in peer reviewed journals as well as invited book chapters. Dr. Wisniewski has been elected fellow and has served on the board of directors and as the co-chair of the Borderline Personality Disorder special interest group of the Academy for Eating Disorders (AED). In 2013 the AED awarded Dr. Wisniewski the Outstanding Clinician Award to acknowledge her contribution to the field of eating disorder treatment.

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