Rare Leader: Eveline Honig, Executive Director, Narcolepsy Network

October 4, 2018

The Basics
Name: Eveline Honig

: Executive Director

:  Narcolepsy Network

Disease focus: Narcolepsy is a chronic neurological disorder that can begin at any age and continues throughout life. It is a sleep disorder, involving irregular patterns in rapid eye movement (REM) sleep, and significant disruptions of the normal sleep/wake cycle. Narcolepsy with cataplexy is caused by the destruction of hypocretin-producing cells in the hypothalamus region of the brain. Hypocretin (also known as orexin) is a neurotransmitter involved in the regulation of the sleep/wake cycle as well as other bodily functions (e.g. blood pressure and metabolism). Narcolepsy with cataplexy is an auto-immune disorder. More research is needed to determine the exact triggers behind narcolepsy without cataplexy.

Headquarters: Lynnwood, Washington

How did you become involved in rare disease: Somebody made me aware of a job at the Narcolepsy Institute and I got coincidently involved with narcolepsy. I quickly realized it was an interesting disorder and that I wanted to help people with the condition. Still to this day there is very little understanding among the public and the medical community. It is a serious disorder. People don’t die and are not in a wheelchair, so it’s an invisible disorder. It affects their lives 24-7 and in all aspects of their lives. I noticed a lot of people with the condition have a poor quality of life, especially if they are not well managed and medicated. I became executive director here 14 years ago.

Previous career: I worked in different capacities in public health. I’m also the mother of four children.

Education: M.D. from the University of Groningen; M.P.H. from Columbia University

The Organization
Organization’s mandate: We are mostly a patient support organization. We help people improve the quality of their lives. We have a bunch of programs to help make their lives better. We advocate for people who have narcolepsy. We also promote research and do awareness among the public, physicians, school personnel and places like that.

Organization’s strategy
: We try to promote our programs. We work directly with patients. Our biggest program is our annual conference. We also work with providers and caretakers, and especially parents and families. We work a lot with the younger population.

Funding strategy: We get support from some big companies, but we also get individual support. We send out fundraising letters. We help people who do fundraisers for us (they are usually small), and we write grants. This year for the first time we are running in the New York City Marathon. We try to get a lot of people involved to raise money for this. Each of the people running for us will be raising funds.

What’s changing at your organization in the next year: We are trying to get more families involved and more children. We have a great new program, the youth ambassador program. We have been doing it for years, but this year we are making a big push. We want to grow this program. It works well. People are excited about it and we are going to focus on it next year.

Management Style
Management philosophy: I like to work together with people. I like to listen to what people have to say and make decisions together. I think it’s important to do that.

Guiding principles for running an effective organization: The focus should be on our mission. We have a good mission statement and that’s what we try to focus on.

Best way to keep your organization relevant: It’s important that we let people know we want to improve the quality of life for people with narcolepsy.

Why people like working with you: I’m a hard-working person. I’m very passionate about what we do. I’m demanding too, but I’m demanding of myself. And I always try to throw in fun and humor.

Mentor: It’s not just one. I have a whole bunch of people. My husband and four children do help me. Girlfriends, especially some older women, who have shown you can have a career and a passion for work and be a good mother and family person at the same time.

On the Job
What inspires you: it’s great to work with a lot of dedicated and passionate people. There are still a lot of improvements we have to make, not only in research, but with a lack of understanding. There are a lot of hard-working people on my board and staff, but also in the community of physicians who treat narcolepsy. There are a lot of passionate people out there and it’s great to work with all of them.

What makes you hopeful: I hope people will be diagnosed earlier. It still takes about seven years between first symptoms and first diagnosis. I hope it is taken more seriously. People think we all get tired and sleepy sometimes. They think that’s all it is. There’s still a huge lack of understanding and people make fun of people with narcolepsy. That’s sad for them.

Best organization decision: In hard times, which we haven’t had a lot, we kept going.

Hardest lesson learned: I always have a huge number of things on my plate that I want to accomplish. Learning that’s often not possible is difficult.

Toughest organization decision: We had some difficulties in the past few years. It’s getting better now, but we had to cut some staff hours and that was hard.

Biggest missed opportunity: We had some good board members that we didn’t listen to enough and we should have. In particular, there was one board member who left who thought she wasn’t being heard, and she wasn’t. It’s important to value your board members.

Like best about the job: We make a difference in people’s lives. We make people feel that they get their lives back when they’ve gotten our support.

Like least about the job: Trying to deal with not having a lot of money. That’s always hard—trying to make it work with less money that we would like to have.

Pet peeve: People whining and not being efficient. I deal with that regularly. “Just do it” is what I want to say.

First choice for a new career: I would want to be in fashion, or something else artistic, like music.

Personal Taste
Most influential book: I’ve read a lot of good books. I love The Secret Lives of Bees by Sue Monk Kidd

Favorite movie: Forrest Gump

Favorite music: I like so many kinds of music. I’m a pianist. I like classical, R&B, and rock. One of my favorites was Aretha Franklin and I’ve been playing her a lot since she passed.

Favorite food: Mediterranean food—no meat

Guilty pleasure: Lots of chocolate—especially very dark chocolate

Favorite way to spend free time: Travel. We’ve taken our kids and spent our last pennies on travel. The result is that three of our four children are living far away. We love to travel and have been all over the world, but still have a lot of countries to go to.

October 4, 2018



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