Rare Leader: Nancy Lazarus, Founder, Achalasia Awareness Organization

The Basics
Name:  Nancy Lazarus

Title: Founder

Organization: Achalasia Awareness Organization

Social Media Links:

Disease focus: Achalasia is a rare, incurable, and progressive autoimmune esophageal motility disease with only palliative treatment. Achalasia sufferers have damage to the nerves of the esophagus which makes swallowing and the passing of food and liquid into the stomach extremely difficult. It is of unknown etiology. Believed to have a genetic predisposition, with an autoimmune component and a viral trigger, approximately 1 in 100,000 are diagnosed annually. Prevalence (existing cases) and incidence (newly diagnosed cases) varies greatly per country. According to recent studies, rates of incidence seem to be rising. However, the question remains whether this is due to raised awareness or other environmental factors. Within the diagnosis of achalasia there are three types, 1, 2 and 3, which compounds its complexity. To add to the frustration of this disease, most doctors will never see a case of it in their entire careers. It is most often misdiagnosed causing years of pain and struggle. There is a desperate need for research and awareness to bring this disease to the public and in turn to medical personnel so that those with achalasia can procure timely diagnosis and treatment.

Headquarters: Los Angeles

How did you become involved in rare disease: I have achalasia. I struggled with it for eight years being misdiagnosed and pretty much ignored by the medical community because my symptoms happened backwards. I started having esophageal spasms that had me curled up in a fetal position. And my GI told me to take Tums and I said, “No, this isn’t normal.” And he said, “Take Tums.” There’s nothing wrong with you. And that went on from doctor to doctor for eight years until finally I wasn’t able to get food down and that’s when I was diagnosed. I never wanted anyone else to have to go through what I went through. I was on the forums online and I noticed that nobody was raising awareness. I started chatting with another girl on Facebook and we talked about starting an awareness month. The next thing I know, she just put up a page for achalasia awareness month. The awareness month happened before the organization was founded. There was such positive response to what we were trying to do that we just kept going, except that two months into everything, Meg Rosecrans, who founded the organization with me, said, “I’m not into this anymore. It’s all yours.” At that point I felt like I couldn’t stop. I had already gotten a website up and created graphics and had gone on different forums. I was too deep into it to just let it go. Nobody was doing it.

Previous career: Location manager for film and TV industry

Education: B.A. in Mass Communications from the University of Vermont, Skidmore College English/Writing

The Organization
Organization’s mandate: Our mandate is to raise awareness for the disease itself, to advocate for achalasia in policy, and to inspire people to individually go out and do their part by raising awareness through tv, film, community, flyers, events, fundraisers and other means.

Organization’s strategy: Our strategy is to motivate achalasia sufferers, family, and friends to raise awareness themselves. Our job is not to do it for everyone. It is to motivate the community to get out there and advocate for themselves.

Funding strategy: We’re working on a funding strategy. It is rough when you’re dealing with volunteers. People come and people go. We’ve had fundraisers that have been done by people who have worked with us. However, that is an area where we need to up our profile and our game.

What’s changing at your organization in the next year: What changes is new blood. Because we are a volunteer organization, the constants are me and Martine L’Eveillé, who is in Australia. We will be bringing on new people. We have just started with someone new, and we are talking to another person to come join us. It’s going to be a matter of new blood, new ideas, new strategy to try to motivate people to benefit themselves. What we found is that there are a lot of people who allow their disease to define them. What we do is say, “You have this disease. It could be a whole lot worse. Let’s raise awareness and hopefully that can lead to research and a cure.” We don’t want to wallow in our disease because as things go, we’re pretty lucky. It’s all about positive motivation and inspiration to get out and do something on the individual level.

Management Style
Management philosophy: That’s changed a lot through seven years of doing this. There were times when I allowed the frustration of not being able to control what other people did get to me. I’m more accustomed to the fact that because it’s a volunteer organization, people may or may not follow through with their offer to work with us, or to get a project completed. I’m a little more laissez-faire about that now. People work with us for a while, they get experience, and they move on. Our head of fundraising, for example, is an amazing young girl who started with us when she was 18. She put on a number of events. She’s in the U.K., and then went off to drama school. She’s moving on to a different part of her life. My management style is to allow people to be who they are, to work with us, and get the experience they want. I can’t treat this like when I’m managing a location job. I can’t rake someone over the coals for not staying at it forever.  

Guiding principles for running an effective organization: Staying true to what we’re looking to do. Our style is inspirational, educational, and motivational. If we could get those elements together through our Facebook, Twitter, and Instagram, we’re motivating people to get out and advocate for themselves.

Best way to keep your organization relevant: We have to say on top of what is happening—any current research and studies that are being done. We have people who come to us who are doing research on achalasia sufferers. We have to be aware of what’s going on in research and testing and advocacy. And what’s happening with rare diseases in Washington, what’s happening with funding, and just stay on top of all of those issues. Sometimes it can be a little daunting, but it’s important.

Why people like working with you: I’m extremely supportive of the people who come and work with us. I’ve learned to let go of being a location manager when I’m managing volunteers. I’ve learned that just being supportive of their goals outside of AAO really is effective in building relationships with our volunteers. We’re not in a position financially yet, which is where we want to be, where we can hire a director so we’re not 100 percent reliant on volunteers, but we’re not there yet.  

Mentor: Myself. Because of learning to advocate for myself, I’ve had to learn to do all of this on my own and I just did it. There’s a great deal of satisfaction in being able to give back to my community.

On the Job
What inspires you: My director inspires me. Listening to people who have overcome woe-is-me inspires me. People who want to get out and roll in the dirt and get a little messy and dirty and create an event, or have an article written about them, or who contact their local networks and do things that raise awareness—that inspires me. When I see people being inspired and motivated by what we’re doing, that’s really inspirational. It makes me feel like I’m making a difference. That’s huge to me. I can’t do this if I feel like there’s nobody on the other end of it.

What makes you hopeful: What makes me hopeful is that I’ll be able to bring someone on to take some of the pressure off me and Martine. That there will be more research. And more knowledge about achalasia. There’s so much more knowledge about achalasia than there was when we started. Those things make me hopeful for, if not a cure, then better treatment. I first had symptoms in 1989. It took until 1996 for me to be diagnosed. I didn’t know another soul who had this disease. One of my doctors hooked me up with one person, but when she had surgery, she wanted to pretend it never happened to her. It’s not like cancer where there’s a support group on every corner, there’s information, there’s financial aid, there’s rides to doctor’s appointments, and all sorts of services that we’re not able to offer to sufferers. That would be miraculous to turn this organization into something where we would be able to offer more services.

Best organization decision: Knowing when to let someone go.

Hardest lesson learned: Not to let the bullies win.

Toughest organization decision: To stick with it during those times when it was really difficult—when there was a great deal of adversity directed toward what we were doing. Standing my ground and being more motivated than ever with the riffraff that came our way. The more others want to just see us fail, the more determined I was to make a difference.

Biggest missed opportunity: The only thing we haven’t been able to do is bring on staff and that’s a goal. Seven years doing this is a long time.

Like best about the job: My relationship with my director Martine. I keep wondering why she’s still around and as motivated as she is. I’m overwhelmed sometimes with just the fact that she is still here.

Like least about the job: There are times that I need to be spending on my personal goals outside of AAO. It’s time consuming to get everything done that needs to be done.

Pet peeve: Flakes—people who say they are going to do something, and they don’t do it. I’m learning to let it go.

First choice for a new career: Soap opera star. I’m working on my writing career.

Personal Taste
Most influential book: The one that I’m writing. It’s my memoir. It hasn’t been written yet.

Favorite movie: Lock, Stock, and Two Smoking Barrels

Favorite music: Anything but polka and heavy metal

Favorite food: Pizza margherita from California Pizza Kitchen

Guilty pleasure: Shopping

Favorite way to spend free time: Hanging with a friend, and… shopping