In April, the field of eating disorders research and prevention lost one of its most influential pioneers. Lynn Grefe, who served as the president and CEO of the National Eating Disorders Association (NEDA) for more than 10 years, died of cancer at age 65.
For the 20 million women and 10 million men who suffer from an eating disorder in their lifetime, Grefe transformed the landscape from one of isolation and stigma, to one of greater community and understanding. Women in the World spoke with Claire Mysko, Director of Programs at NEDA about the life and work of Lynn Grefe, whose wide-ranging accomplishments will continue to save lives. Here’s a look at how she made a lasting impact over the course of her career there.
She was a women’s health advocate.
In 1995, Grefe was named director of the New York Republican Family Committee, which became the Republican Pro-Choice Alliance in 1997 and then merged with like-minded organizations in 1999 to form the Republican Pro-Choice Coalition.
She harnessed the power of personal experience.
In 2003, Grefe joined NEDA as a parent of a child who was suffering from an eating disorder. “She understood on a deep level the sense of isolation and confusion that comes with struggling with an eating disorder and being a parent of someone struggling. She always started from a place of personal connection, and it really opened the door to deeper conversation,” Mysko said.
She unified the eating disorders community.
At the time Grefe joined NEDA, eating disorder awareness was still a grass-roots movement. For someone in need of help, Mysko said, “you were on your own. There wasn’t a central place to go. You’re already feeling confused and alone, and to not be able to easily find a community really enforced that sense of hopelessness. Until NEDA there wasn’t a clear, central place, with really solid information.” Through NEDA, Grefe was able to bring professionals, researchers, advocates, and activists together. “We hear all the time from people that joining our community was the first time they felt less alone,” Mysko said.
She held the media and businesses accountable.
Grefe didn’t shy away from calling out businesses and the media for the role they played in triggering and encouraging eating disorders. “She was a fearless advocate,” Mysko remembers. In 2013, Grefe met with Abercrombie & Fitch executives, joining Proud2BMe ambassador Benjamin O’Keefe in lending support to 17-year-old Cali Linstrom, who was protesting the company’s relationship with teenagers. In 2014, Grefe spoke out against Victoria Secret’s “Perfect Body” campaign on behalf of NEDA, saying “Of course we find the phrase ‘a perfect body’ offensive and demeaning. There is no such thing as who determines such a meaningless standard. All this type of hype does is make people question their own body image and self-esteem.” Most recently, Grefe wrote for The Huffington Post about eating disorders.
She created a helpline.
The NEDA helpline and the click-to-chat option provide support and referrals to those in need of direct and immediate help. The creation of a helpline, Mysko said, was, “a top priority for Grefe. As a parent, she was in those shoes herself and understood how important it would be. She was very devoted to giving people the sense that they aren’t in this alone, and that there’s help out there.” Now, anyone can call the helpline or chat online with specially trained volunteers, who provide referrals and access to resources.
She pushed for laws to help identify and prevent eating disorders, and broke down barriers to care.
Grefe worked toward important legislative victories for screening and education. “She wanted people to be screened so that if they were at risk, or beginning to exhibit signs of disordered eating, they could get help,” said Mysko. In New Jersey, Grefe helped to ensure that patients with eating disorders could be covered by their insurance companies. “There are still many, many people having problems getting coverage for eating disorders from their insurance companies. Lynn was passionate about closing that gap,” said Mysko. Grefe also worked with insurance companies to help them educate their employees, doing a series of webinars to help them better understand eating disorders.
She took advantage of technology to help a younger generation.
Grefe saw the value of technology in reaching a younger population. In addition to the click-to-chat helpline option, she launched NEDA’s youth program, Proud2BMe, a separate site for teens and young adults. Mysko emphasized that the “focus isn’t just on eating disorders. It’s really about encouraging body confidence and promoting self-esteem. Proud2BMe gives young people a space to respond to what they’re seeing in the media. We hear again and again from young people, ‘I don’t see myself reflected in the media. Where am I?’ So we focus on giving them a space to be media-makers themselves.”
She recognized that eating disorders don’t discriminate.
Grefe understood that many people suffer from eating disorders in silence for fear of the stigma surrounding the disease. “There are still so many stereotypes about who gets eating disorders,” Mysko said. “I think that when you hear the term eating disorder, because of the type of media coverage, there’s still this picture of anorexia—of someone who is very underweight, usually a young white woman. We’ve made some progress there because of Lynn. She always spoke about the fact that eating disorders don’t discriminate. They come in all shapes and sizes, affect people of all ethnicities, sexual orientations. This is something we need to keep pushing forward.”
Lynn Grefe will be greatly missed at NEDA, but the community she built endures. NEDA continues to work to fund eating disorder research, implement screening and early intervention programs, and provide resources and treatment options to those in need. For information on eating disorders, resources, and to connect with the NEDA community, visit the website.