In a previous newsletter, we mentioned that Eliza Lanzillo had come on board as our new Program Director of Advocacy Initiatives. (Click here if you are new to Hynes Recovery Services and missed this earlier announcement).

Eliza recently attended her first EDC Lobby Day. I asked if she would share with our community her experience of meeting with legislators and advocating on two very important requests initiatied by the Eating Disorders Coalition. 

EDC Lobby Days are a wonderful opportunity to join a community of advocates from across the country with the hope that while engaging with our elected congressional leaders, we are able to shed a light on the devastating impact of an eating disorder diagnosis.

We would love to hear from the university community, and connect with on-campus administrators and/or health care practitioners who have been a part of this advocacy initiative in the past. Please reach out to us at your earliest convenience.

And for those that haven't yet been to DC, we hope that Eliza's experience shared below will inspire you to attend a future EDC Lobby Day.

Thanks Eliza for taking the time to write this wonderful summary below...

Warm regards,
Dawn Hynes, MSW

Registering to attend the 2017 Eating Disorders Coalition (EDC) Lobby Day, I did not know what to expect. As president of Brown University’s chapter of Active Minds, I had been actively involved in several mental health advocacy initiatives over the years, but attending a Lobby Day would be a completely new experience.

The morning of October 5th, I woke up before my alarm – a rare event that I attribute to the combination of nerves and excitement. While not a Maryland native, I have lived in the area for nearly two years and was assigned to advocate on behalf of the state. Upon joining my team members for our morning training session, I felt immediately welcomed into a community of like-minded individuals with a shared passion and goals. Opening remarks were provided by Dr. Bryn Austin, the EDC President, and Kitty Westin, founder of the Emily Program Foundation.

The collection of inspirational and educational presentations left me feeling motivated, energized and hopeful – feelings that I am confident those around me experienced as well. During the training session, we were informed of our two “asks” for the day.

Our first goal was to request that the annual public health surveys by the Centers for Disease Control and Prevention (CDC) include questions about disordered eating behavior. Interestingly, questions about Anorexia Nervosa and Bulimia Nervosa were included in the CDC’s Youth Risk Behavior Surveillance from 1992 until 2015, at which point the questions were removed. The root cause for their removal is unknown, but their absence has significant implications for the direction of eating disorder research. Without an accurate and up-to-date prevalence estimate of these behaviors, we do not have all of the information needed to inform research directions aimed at improving early identification, treatment and sustained recovery. Moreover, it is critical that questions are not limited to Anorexia and Bulimia. In fact, Binge Eating Disorder is the most common eating disorder and accordingly, failure to include questions related to this disorder would be a disservice to the public.

Our second goal was to urge Congress to recognize National Eating Disorders Awareness (NEDAwareness) Week. This effort is being led by Senators Tammy Baldwin of Wisconsin and Shelley Moore Capito of West Virginia through the introduction of a Senate Resolution to recognize the last week of February as NEDAwareness Week. Specifically, the resolution will (1) recognize NEDAawareness Week, (2) recognize the prevalence of eating disorders and need for treatment, (3) support the goals and ideals of raising public awareness for eating disorders, (4) acknowledge that eating disorders can be successfully treated and people can recover, and (5) encourage the government and citizens to support NEDAawareness Week through programs and activities and promote awareness of eating disorders. Having personally participated in NEDAwareness Week for several years, I can attest to the power of this event as an opportunity for advocates and individuals with personal experience throughout the country to come together to recognize eating disorders as a critical public health concern and fight for change.

Beyond presenting our two major “asks” during our congressional meetings, members of our group were asked to share personal stories of the role eating disorders have played in our lives. While the majority of advocates had personal experience with an eating disorder, there were several people who shared stories of supporting friends or family members through the recovery process. I have publicly shared my own recovery story on several occasions, yet when it came time for me to speak in front of congressional staff I cannot deny feeling nervous. However, I was comforted by the support from my team members and instant connection I experienced from this group of like-minded, passionate strangers. In addition, many of the staff we met with expressed genuine interest and curiosity in our stories, a response that left me feeling hopeful and proud of my decision to share my experience.

After completing our congressional meetings, we congregated together as a group to share our highlights and reflect on the day. The highlight of my own day was realizing the power of using my voice for change. I left Capitol Hill experiencing a range of positive emotions – I felt empowered, I felt valued, I felt supported, and I felt heard. I look forward to participating in many more EDC Lobby Days and encourage all those who may be nervous or hesitant in the same way I was to take the leap of faith – you will be happy you did.

Swanson, S. A., Crow, S. J., Le Grange, D., Swendsen, J., & Merikangas, K. R. (2011). Prevalence and correlates of eating disorders in adolescents: Results from the national comorbidity survey replication adolescent supplement. Archives of general psychiatry, 68(7), 714-723.

Additional thanks to Lara Edelstein, LGSW who shared this picture above. Lara and I met during a previous EDC Lobby Day and this Fall, she was the Team Leader for one of the two Maryland advocacy teams.