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A Life Lost: Lynn Grefe

A Life Lost: Lynn Grefe (April 27, 1950–April 28, 2015)

by Margo Maine, PhD, FAED, CEDSScreen Shot 2015-02-02 at 6.58.13 PM

In Eleanor Roosevelt’s words:

“Many people will walk in and out of your life, but only true friends will leave footprints in your heart.”

On April 28, 2015, the eating disorders field lost its most prominent champion, Lynn Grefe, who had served as the president and CEO of the National Eating Disorders Association for more than a decade. She left countless footprints in hearts across our country and across the globe in her leadership role at NEDA. Many of us feel both a personal and a professional loss, as Lynn had reached out to so many in her efforts to overcome eating disorders.Screen Shot 2015-05-04 at 10resize

A few special souls see the good in any situation and simply bring out the best in other people regardless of the circumstances. That was Lynn. In 2003, she brought her innate ability and desire to connect with others and a stubborn optimism to NEDA. With her grit, grace, and tireless dedication, Lynn turned an organization that was full of potential into one that has transformed how the U.S.—and the world—deals with eating disorders. The politics and divisiveness in our field and in our country never stopped her. Where many of us saw insurmountable obstacles, Lynn envisioned the chance to educate and enlighten others, and she never walked away from an opportunity like that. Her fast smile and the light in her eyes brightened every room Lynn entered and opened every heart she encountered.

Lynn took every opportunity possible to educate others about the complexities of eating disorders, the suffering they cause, the many contributing factors, and the need for more research, more services, more information and outreach, more prevention, and more attention to government policies and legislation. She learned as much as she could from clinicians, researchers, and activists in the field, but equally valued the experiences and perspectives of the sufferers and their families and loved ones. At the end of the day, she believed that NEDA had to answer the needs of those suffering more than any other constituency. She was always willing to do one more interview with the media and share her own experience as a parent with other families facing the challenge of eating disorders.

In the decade that Lynn devoted to NEDA, she accomplished more than anyone could have predicted. The short list includes:

  • Completing the successful merger of four national eating disorders organizations into NEDA.
  • Moving NEDA headquarters across the country from Seattle to New York to take advantage of the proximity to the power base Manhattan represents and advocacy opportunities in Washington, D.C.
  • Helping NEDA become the resource and clearinghouse for information about eating disorders for the public, from roommates and loved ones to coaches, teachers, and health care professionals.
  • Institutionalizing the annual National Eating Disorders Awareness Week campaign, including having the colors of NEDA displayed on the Empire State Building during that week.
  • Developing and expanding NEDA’s Helpline, which provides information and referrals to those in need—in a recent quarter, calls came in from more than 70 countries.
  • Implementing an online screening program with click-to-chat potential.
  • Creating the NEDA Navigators peer support program as part of the Parent, Family & Friends Network to help sufferers and families access treatment and resources, as well as the Loss Support Network, providing support to those who have lost a loved one to an eating disorder.
  • Designing a unique national conference that brings together families, individuals, and professionals in one setting to learn about eating disorders and discuss new directions in treatment, research, and prevention.
  • Instituting an interactive website for teens and young adults,, that explores the impact of our celebrity culture and the dominance of fashion, beauty, and media in our lives: Proud2BMe is building a nation where confidence will rule and eating disorders will fade away.
  • Launching the NEDA Walks program, which has grown to 65 events across the country, with more than 15,000 participants annually.
  • Establishing the Solutions Through Advocacy and Reform (STAR) program to legislatively advocate for awareness, education, early intervention, and prevention programs; funding for research; and improved access for the treatment of eating disorders on both the state and federal levels. STAR empowers and supports NEDA volunteers who lobby for change by speaking with legislators, mobilizing members, and forging alliances with other groups who share our vision. Shortly after Lynn’s death, we had an impressive victory with the Missouri legislature creating a Joint Committee on Eating Disorders to review the regulation of insurance and other matters affecting the care and treatment of eating disorders and to make recommendations for future legislative action, paving the way for future reforms and similar actions in other states. The Missouri governor has also signed a law closing the insurance gap for eating disorders coverage in a groundbreaking clarification of mental health parity.
  • Initiating the historic first National Eating Disorders Awareness Caucus in Congress with representation and support from both political parties. The caucus is working on key pieces of legislation, as well as a formal request to the U.S. Government Accountability Office to “undertake a review of the prevalence, mortality rate, and economic impact of eating disorders in the United States.” Lynn saw this information as critical to “garnering the governmental backing and research needed to move forward our vision of a world without eating disorders.” 

There are many more initiatives, media advocacy campaigns, sponsorships, and alliances that Lynn started during her tenure with NEDA. Countless companies listened when Lynn talked to them about irresponsible advertising and marketing campaigns that only contribute to poor self-esteem, negative body image, and eating disorders.

Undaunted by ignorance or by outright resistance and hostility, Lynn always saw a solution and built a bridge over whatever gaps and divisions were there—no matter how long they had been there. Lynn could draw the positive forces and goodness out of any one of us and any situation.

Although many in our field know her contributions to NEDA, Lynn was a life force far beyond the eating disorders community.

Earlier in her career, Lynn worked in the field of juvenile justice, playing an instrumental role in the development of the first halfway house for girls in the state of Florida. Ever the trailblazer, Lynn later used her passion for justice and her indisputable communication skills to address women’s health and reproductive issues. She assumed a leadership role in many political campaigns, eventually serving as the national director of the Republican Pro-Choice Coalition (now known as the Republican Majority for Choice). In all of these roles, Lynn shed light on different viewpoints with the goal of promoting understanding and mutual agreement as ways to better address the public good.

You see, advocacy was Lynn’s passion and her strong suit.

The word advocacy originated as a Medieval Latin word, advocatia, meaning “to call to one’s aid,” or to intercede on behalf of others, protecting or championing the underserved. That’s how Lynn lived her life—calling on herself and on others to help whoever was in need. On Capitol Hill, in political and corporate arenas, she was so engaged and engaging, so willing to listen and to speak, that others would instantly want to help. As one professional friend of hers said, she gave herself “with no restraints.”

Lynn was a change agent and advocate throughout her life. In honor of her extraordinary leadership, the NEDA board of directors has established The Lynn Grefe Legacy Fund for Advocacy and Legislative Action. Through this fund, her spirit and commitment to the eating disorders community will continue.

Personally, I will never forget the lessons she taught me and the spirit she brought to NEDA and to the field of eating disorders. After every conversation with Lynn, my heart was fuller and my head clearer.

Like many of you, I will never stop missing her, which only means that I will never stop trying to move her mission and passion forward.

As Marge Piercy wrote in her poem “To Be of Use”:

The people I love the best
jump into work head first
without dallying in the shallows
and swim off with sure strokes almost out of sight.

Thank you, Lynn, for being so easy to love and so loving, for jumping in headfirst, and for leading us through turbulent waters with those sure strokes. It’s our turn to swim now.

About the author –

Margo Maine, PhD, FAED, CEDS – A founder and adviser of the National Eating Disorders Association and founding fellow of the Academy for Eating Disorders, Dr. Maine is author of Treatment of Eating Disorders: Bridging the Research – Practice Gap; Effective Clinical Practice in the Treatment of Eating Disorders; The Body Myth; Father Hunger;and Body Wars;and senior editor of Eating Disorders: The Journal of Treatment & Prevention.The 2007 recipient of The Lori Irving Award for Excellence in Eating Disorders Prevention and Awareness, she is the 2014 designee for the NEDA Lifetime Achievement Award. A member of the Renfrew Center Foundation Conference Committee and its Clinical Excellence Board, Maine lectures nationally and internationally on eating disorders and maintains a private practice, Maine & Weinstein Specialty Group, in West Hartford, CT.


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