In this episode, Claire Mysko, CEO of the National Eating Disorders Association gives us a rundown on NEDA, and many of the wonderful resources that they offer for people seeking to recover from an eating disorder as well as their loved ones.
Important links/resources –
National Eating Disorders Association
NEDA Confidential Helpline – 1-800-931-2237
For help and support http://www.nationaleatingdisorders.org/find-help-support
For crisis situations, text “NEDA” to 741741 to be connected with a trained volunteer at Crisis Text Line
NEDA Walks and Events
Claire’s book –
Full transcript –
Kathy: Hello, and welcome to ED Matters. I’m Kathy Cortese, your host, and today, it’s my pleasure to welcome Claire Mysko. Claire is the Chief Executive Officer of the National Eating Disorder Association, also known as NEDA, and an internationally recognized expert on eating disorders, body image, and media literacy. She’s the author of Does This Pregnancy Make Me Look Fat? The Essential Guide to Loving Your Body Before and After Baby, and You’re Amazing! A No-Pressure Guide to Being Your Best Self, an award-winning self-esteem manual for girls. Claire joined NEDA in 2011. She previously served as the organization’s chief operating officer, director of programs, and as a consultant on Proud2Bme and Proud2Bme on Campus, NEDA’s youth platforms. Prior to joining NEDA, she served as the director of the American Anorexia Bulimia Association and spearheaded the development of pioneering online communities at Girls Inc. and SmartGirl. During her tenure at NEDA, Claire has overseen a rapid expansion in both reach and programs including the implementation of an evidence-based eating disorders prevention program in the New York City schools, initiatives to bust prevailing myths about eating disorders, and the cultivation of key relationships with companies including Aerie, Crisis Text Line, Facebook, Instagram, and Pinterest. Claire, welcome! Thank you for joining us.
Claire: Thank you so much for having me.
Kathy: It’s my pleasure to spend this time with you so you can educate and provide just some solid information on NEDA, the scope of NEDA, its reach, and the various programs that NEDA offers. Where would you like to start?
Claire: Well, I’ll start off by saying NEDA is the largest organization serving individuals and families who are personally affected by eating disorders. And that’s really the heart of what we do. We recognize that eating disorders are very complex illnesses, very overwhelming. People who are struggling are really looking to connect and connect with resources. So we are a trusted resource and we also run a helpline which is a core program of NEDA. People can call us at 1-800-931-2237 or reach us through our website at nationaleatingdisorders.org. We have a click-to-chat function on our website which is becoming an increasingly popular way that people can reach out to us. Our trained volunteers can provide resources, support, and connection to treatment options in their communities. We also have a peer support program, which is called the NEDA Navigators, and Navigators is really designed to connect people with others who get what they’re going through. Again, we recognize that these illnesses can be very isolating, very overwhelming for parents and family members and loved ones in particular. In addition to getting information about eating disorders, it can be very, very powerful to connect with someone else who really understands, and it’s further along in the process. So that’s what Navigators provide. So we can connect parents and family members, loved ones, with others who understand and really can guide them through the process.
Kathy: As long as I’ve known NEDA, it’s always had a lot of heart. And maybe you can speak a little bit to that, about this particular aspect, the connection piece and the peer support, and what that can actually do for an individual who’s terrified of even starting recovery.
Claire: Sure! Again, it can be such an overwhelming process and such a lonely and isolating illness. People feel very alone, very confused, so to be able to make that connection to someone else and really talk to them about the experience in a meaningful way can be so empowering. And we hear that all the time from people who contact our helpline and are connected to others through our Navigators program. We also have a walks program. We do 65 walks all around the country. In addition to being fund-raisers for NEDA, these walks are a way for people to be part of the NEDA community. And some of our most engaged volunteers came to us through the walks. And again, it’s this really incredible experience of being able to be part of a community and to feel like you’re not alone. We see that also with our national conference and other opportunities where people have the ability to connect. And that’s a really critical piece of what we do.
Kathy: In terms of your NEDA walks, what would the experience be for someone who perhaps has never participated before so that they might be prepared and might then be more willing to join the next NEDA walk in their area?
Claire: Well, the walks are again a really powerful experience, a celebration of recovery, and again a strong, strong community. So if you’re interested in learning more about our walks program, we have a walk site, nedawalks.org and you can look up your area and see if there is a walk near you, and register and become a part of that community.
Kathy: Your trained volunteers–
Kathy: Tell us about that. What kind of training–how do you screen? What maybe draws these people to you?
Claire: I’ll talk about heart. [laughter] Our volunteers are amazing. They’re so dedicated. And we do have a very robust and comprehensive training program for our volunteers. We work very closely with our clinical advisers to develop that program, and it’s continuing to be an evolving process in looking at, as we expand, how we reach people. As I’ve mentioned before, we’ve expanded to click to chat. We’re doing much more with remote volunteers now. So we’re always really very mindful of developing training programs that are comprehensive and also vetting our volunteers so that we’re sure that they are in a place where they can really best serve as volunteers. We have many volunteers who are interested in becoming clinicians themselves so they’re in school, others who do have a personal connection to the issue, and they are just a wonderful, wonderful volunteer base. And we’re continuing to expand our volunteer program. So there are lots of ways to get involved with NEDA.
Kathy: You mentioned the clinical advisory board. I know you have a board of directors. You have a junior board. I don’t know if the public at large realizes how much knowledge might be packed into one room or one meeting [laughter] when you have your professionals gathering.
Claire: NEDA has the dream team, all the top experts in the eating disorders field. And we’re so fortunate to have access to so much expertise – clinical, research, advocacy, education. And we really, really value those relationships with those experts. And they’re so involved in all aspects of the organization from our helpline training, as I mentioned, to our Feeding Hope Fund, awards. We actually provide grants for research. We work closely with our research advisory council on that. All program, development, there are so many aspects of the organization where we’re so fortunate to have input from the top experts in the field.
Kathy: And some of the research funds that you provide, they’re not little things. [laughter] They’re pretty big projects [laughs] that you allow people to take on. Yes?
Claire: Well, research for eating disorders is woefully underfunded. When you look at the research dollars spent on eating disorders as compared to other mental illnesses, it’s really minuscule. And so there’s a tremendous need for research dollars so that we can better understand these illnesses and treat them effectively, and also so that we can drive advocacy and really put eating disorders on the map as a serious public health issue which it absolutely is. Thirty million Americans struggle with eating disorders at some point in their lives so the need for research is great. That’s a quarter piece of what we do. Our Feeding Hope Fund this year will pass the million dollar mark in funds provided through NEDA for research. We fund research for innovative treatment; we fund research for prevention as well as training. So there’s a scope of what we’re doing in terms of funding research for eating disorders. This year, we’re also launching an Early Career awards. So for researchers who are earlier in their career, we are going to be providing an additional grant this year. So it’s critical that we, as a field, support research and drive research so that we can advance our understanding of these illnesses.
Kathy: Thank you! Advocacy work. NEDA’s always been there and pretty, I would say, useful for the common man because you’ll say, “Hey, this is what’s coming up in our senate. This is what’s coming up. Can you please get behind that?” There are some–lot–lots of things, lots of bills that you’ve encourage [laughter] people to support, and reach out to your senator, and you make it pretty easy. [laughs] How did you, guys, craft that so that it could come across and allow people to just participate?
Claire: Well, certainly technology and social media have made it much easier for us to reach to people quickly but as you mentioned, NEDA does work on advocacy at both the federal and state level so we work to advance legislation, and also to engage people in raising awareness on the grounds. Right now, we’re working on several priorities in terms of our legislative advocacy. Certainly, insurance reform is a big piece of what we’re doing in the advocacy space right now. Unfortunately, one of the top inquiries that we get through our helpline and other channels is from people who are really struggling to get coverage for eating disorders and doing battle with their insurance companies. So we’re really looking to drive change at both the federal level, in terms of clarifying mental health parity, and also at a state level. And there was groundbreaking legislation that was passed in Missouri which essentially clarifies existing mental health parity legislation that was already on the books. What that piece of legislation did is add language about eating disorders. And that is going into effect in 2017, and we’re looking at that very closely and introducing bills in other states. That’s a very strong model for driving change in this area. We’re also looking at legislation to ban the sale of dietary supplements to minors. And we’ve done some work with–on that in Massachusetts. And we’re really looking to engage volunteers at a local level. As you mentioned, we send out emails, we engage people through social media. But if you’re interested in legislative advocacy, you can certainly sign up for our email alerts and visit our website to get more information about what you can do on the ground in your state to affect change.
Kathy: One thing that NEDA has done so nicely, I think, over the years is sponsored annual Eating Disorders Awareness Week. And maybe you can just speak a little bit about what it’s been and what you might be doing in the future with the Eating Disorder Awareness Week.
Claire: National Eating Disorders Awareness Week is a wonderful way to get the message out certainly around providing hope and encouraging people to seek help. That’s a main driver of the week. But in addition to that, it’s really about raising awareness about what eating disorders are and busting those myths. There are so many myths about eating disorders and who gets eating disorders and what eating disorders look like. So what we are able to do with National Eating Disorders Awareness Week is really have a concentrated amount of time where we’re educating people about not only how to get help but the fact that these are illnesses that affect everyone, people of all ages, of all genders, ethnicity, socioeconomic status. We–this past year, in conjunction with National Eating Disorders Awareness Week, we also put out a video called Marginalized Voices, which really gave voice to people who struggle with eating disorders who are often left out of the mainstream narrative about who struggles with these illnesses. So that’s another big priority for us. We have seen astronomical growth in our reach for NEDAwareness Week. Thanks in large part to partnerships with social media platforms. We work very closely with Facebook, Instagram, Pinterest. We saw a reach of 200 million on social media this past year which was incredible to have that kind of reach in such a short amount of time. We screened for 40,000 people for eating disorders during that week. So it’s a really powerful way to get the message out and also to get people to get screened and to reach out to our helpline to get connected to resources and information.
Kathy: It really brings so much of what you do right into the community because community leaders of various sorts will I guess become–what’s the word? Are they facilitators? Facilitators? What is the term you use for people who want to bring it into their community, National Awareness Eating Disorders Week?
Claire: We’ll we have volunteers who can sign up through–on nedawareness.org. Anyone who wants to do an activity in their local community, we do a lot on the ground through community centers and colleges. We have a speaker training program that you can sign up to be a speaker. And again, we take our training very seriously so we work with our clinical advisers and to develop a webinar training so that all of the speakers who are trained to go out in the communities really understand how to speak responsibly about eating disorders and share your story responsibly. But we have a lot of people who are interested in getting involved through NEDAwareness Week and we have many ways that you can do that.
Kathy: Thank you! At some point, I came across this information, and I think you’re the one to ask. But NEDA is developing or it has developed a new initiative called the Body Project. What can you tell us about that program?
Claire: The Body Project is an eating disorders prevention program, body acceptance program that actually has decades of very, very solid evidence behind it to show that it reduces eating disorders symptoms as well us body dissatisfaction. So we work with Carolyn Becker and Eric Stice. They’re the researchers who have really developed this program over the years. We implemented or disseminated the program in New York City schools and we just got funding to expand that to community-based organizations, and we’re in the process of training our NEDA network organizations and these are organizations across the country that do regional work on eating disorders. So we are training their staff in the program. And it’s a really, really powerful program in that it trains people in–young people in particular, in how to resist the messages around the glorification of thinness in our culture. And I’ve done this training myself, and I’ve sat in on many of them, and it’s a very, very transformative experience. It’s one thing to understand or be frustrated by the images, and the onslaught of images, but to be in a room where you’re really looking at this and getting tools, actual tools in how to resist these messages and images. And also, another amazing thing about this program is that it gives young people a script to actually respond to negative body talk. So you actually run through scenarios where you’re going to be he—typical things that you would hear, negative body talks, comments that peers make about themselves or about each other, and you have the opportunity to really confront that and learn the language of how to resist it. And it’s a very, very effective program. And we’ve seen that in our dissemination of it, and that’s why we’re very excited to scale this and take it national. And it’s also really powerful for the facilitators. We know that educators and adults, in teens’ lives, have a real influence, and so we–we’ve talked to so many facilitators who’ve run–gone through these programs and say, “You know what? I think differently now about how I talk about my own body and how I talk about food,” or “You know, I realized now that I’ve made comments about dieting in front of my students,” or thi—revelations about how to look at food, weight, and body image. So as much as we can get this out into the community, it’s really been great to see the growth of the program, and we’re looking forward to expanding it even more.
Kathy: I know that the researchers who developed the Body Project have amassed a lot of data. Everything they show us says that it really does change people’s thinking, which is a remarkable change. You do have this other really fascinating thing going on. And I think that it’s very, very current given that texting is so well used these days. [laughs] Do we communicate any other way? [laughter] Do young people communicate any other way? But [laughs]–
Claire: Thousands of texts a day.
Kathy: You’ve solidified the partnership with Crisis Text Line. What can you tell us about this particular system and how it would work for somebody who has questions or concerns about their eating disorder or their friend’s eating disorder?
Claire: Well, Crisis Text Line is a really innovative organization. And we’ve been in conversation with them for a while. And what they’re doing is providing crisis intervention via text. And as we know, young people are on their phones all the time in the number of texts that are sent. And so the idea that you can use text to actually reach out for help in a moment when you need it most, and if there’s someone on the other end who is trained to help you is sort of a no-brainer, but this is a fairly new concept. So I was very excited about this, and we’ve been thinking about this at NEDA. Certainly to be able to provide that kind of support via text is something that’s been on our radar. The another interesting thing about our partnership with Crisis Text Line is that they really came to us for our expertise on eating disorders. So we worked with them–before we officially launched this partnership, we worked with them to really develop a training for their volunteers, and that was largely informed by our own training on eating disorders so that their volunteers were really well-versed in the types of issues that could come up for someone who’s struggling with eating disorder. So that was a very collaborative process. And now, you can text 741741 and text NEDA to that number, and you can be connected directly with the crisis volunteer who has been through this training that we worked with them on. And the other really wonderful thing about this partnership is that we’re able to really see the data. We can see, in partnerships with Crisis Text Line, how many people are texting with eating disorders related issues, what time of day is this happening, is there a day of the week when people are particularly in a crisis that surrounds eating disorders. So there’s very, very valuable information and data that we’re also getting from this. And that’s something that we really need to look at as a field and that NEDA is really driving forward the need for more information, data so that we can better understand how to reach people, how to treat people, and ultimately, how to provide as much hope as possible. And that’s really, really essential to what we do.
Kathy: Claire, I can’t thank you enough. I think there’s probably much more pieces of information we could go into, but I think it’s certainly helped our listeners know what a phenomenal resource NEDA actually is for people who even have the simplest question about eating disorders, that you guys are there, you offer hope for recovery. And I don’t know how your organization gets everything done. [laughter] But you get a lot done.
Claire: We have an incredible team, really.
Kathy: And I thank your work. I also thank you so much for your time today. Our guest has been Claire Mysko, CEO of National Eating Disorders Association.