Welcome to our Changemaker Profiles blog series! Each edition we profile one outstanding social changemaker from the JVA client community. By sharing the stories of some of the incredible people we get to work with every day—each accomplishing extraordinary work in nonprofits, government, social enterprise and elsewhere—we hope we will bring a little light and inspiration to your day! This time, we spoke with Toni Saiber, founder of the Eating Disorder Foundation.

1. Tell us about you and your organization and the social change you are trying to achieve.

“We are working to make eating disorders a public health priority. Our broadest aim is to radically alter the trajectory of suffering, illness and death that accompanies eating disorders. We approach this lifesaving work through a dual focus of support and education, all conducted with an openness to innovation, dedication to self-realization and an unshakeable belief that nothing should be allowed to compromise the humanity of those we serve.

“Thirty million people in the U.S. alone suffer from eating disorders. Compared to other diseases that get widespread public support, such as diabetes, Alzheimer’s and breast cancer, the number of people suffering from an eating disorder is much higher. So why don’t we hear more about it? The bottom line is: shame. We are trying to break down the wall of shame so people will get essential care and support.”

2. What keeps you inspired and going when things get tough?

“What keeps me most inspired is watching people I serve get well and move on to living good, productive lives. My husband, too, and my spirituality. There have been so many times when I have wanted to throw in the towel, when I feel like I’m swimming upstream, but persistence—the same persistence that kept me locked into an eating disorder for almost 20 years—has transformed into a kind of persistence and grit that gets me through the tough times.”

3. What advice would you give to someone who is trying to break new ground in a traditional field?

“There’s always more than one solution to a problem. There’s always traditional ways of approaching something—try an alternative. Mix it up.”

“When I started the Eating Disorder Foundation, people said ‘are you crazy? People aren’t going to want to support that.’ But I wouldn’t take ‘no’ for an answer. I encourage people to have persistence, grit and to do something in a different way, find creative alternatives, and don’t be afraid of failure because there will be many small failures.”

“I believe Winston Churchill said ‘never, never, never give up.’ People do see your perseverance—even if you have some failures, if you pull yourself up and try again, people see and rally behind that.”

4. What book do you recommend to everyone you meet and why? OR What book is on your to-read list and why?

“To anyone, I would recommend Susan Kenney Stevens’ book, Nonprofit Lifecycle: Stage-based Wisdom for Nonprofit Capacity. I also recommend a book by Mark Nepo called Book of Awakening. He is one of Oprah’s regular guests. He is a very spiritual man; my husband and I take turns reading passages from his book out loud to each other. The book has one passage for each day, it is full of inspirational snippets and it’s a great way to start your day.”

5. How have you worked with Joining Vision and Action (JVA) and how has that helped your organization?

“We worked with Joining Vision and Action to hire our new executive director. As it says in the book mentioned above, it is very common that a nonprofit will go through four or five people before they get the right person in the position of executive director. We went through three before we realized we’d be better off with some professional help.

“With JVA, we had a wonderful first half-day workshop to determine what it is we were looking for, and that process was enlightening for all of us. We loved how much we learned about ourselves and about what the organization needed. They helped us throughout the interviewing process and narrowing it down. …

“Going into this, we imagined we would hire a 40-year-old female with a background in mental health. We ended up with a 60-year-old gay man who worked in nonprofit development for the past 20 years and was a priest before that—and he is the best!

“JVA helped us to define what we do best and what we need help with, and enabled us to trust someone outside of our board who has more expertise than we do. It humbled us.”