RARE Daily

Rare Leader: Keith Harper, Board President, Narcolepsy Network

January 21, 2021

The Basics
Name: Keith Harper

Title: Board president

Organization: Narcolepsy Network

Social Media Links:

Disease focus: Narcolepsy is a medical disorder that impacts one in approximately 2,000 people in the United States of America. The disease is a sleep disorder, involving irregular patterns in rapid eye movement (REM) sleep and significant disruptions of the normal sleep/wake cycle. While the cause of narcolepsy is not completely understood, current research points to a combination of genetic and environmental factors that influence the immune system. Only about 25 percent of people with narcolepsy are diagnosed.

Headquarters:  Lynwood, Washington

How did you become involved in rare disease: I was diagnosed with narcolepsy in 2005, and I was lucky enough to find a treatment that worked for me from the get-go. The good news is that there are a number of different treatments for people with narcolepsy—but what works for one person may not work for another. I went about five years without ever meeting anyone else with narcolepsy. When I moved to New York, I went looking for a support group thinking, “Surely there must be one here, in one of the largest cities in the world.” I saw that Montefiore’s Narcolepsy Institute up in the Bronx had some support groups during the week, but that didn’t really work for me because I was working. I started a group based in Manhattan, and we’ve had folks come from all over the area—even as far away as Philadelphia. During the first few months, I wasn’t sure if people would show up—but they did! Now we have close to 400 members.

Previous career: Currently works as a graphic designer at a technology company.

Education: Bachelor of Fine Arts from the Rochester Institute of Technology

The Organization
Organizations mandate: Where our organization shines is connecting people together. The three pillars of Narcolepsy Network’s work revolve around support, education, and advocacy. We fund 16 support groups around the country through meetup.com, which in turn serve more than 1,200 people with narcolepsy. We started doing virtual support groups every Thursday this year—they’ve been very successful. Virtual programming is something that we had talked about doing before the pandemic, and the situation gave us the push to do it.

These weekly support groups have meant a lot to the community—folks from all around the country, and all around the world.

Narcolepsy Network has a large annual conference, which is the only conference of its kind in the narcolepsy space. Every year we bring hundreds of people together—patients, families, supporters, researchers, doctors, and representatives from pharmaceutical companies. We rotate these conferences around the country, in order to make it easy for folks to join us no matter where they live. During each conference we have mini support groups. There are tons of educational sessions on a wide variety of topics, as well as fun social events and opportunities to make the connections of a lifetime. Luis Ortiz, has done a great job spearheading our conference planning over the last two years and has also started putting together smaller one-day conferences, which should resume after the pandemic comes to an end.

On the education side, we have a lot of materials on our website. We also distribute pamphlets and brochures to doctor’s offices and medical professionals around the country.

One of the newest, most impactful things that we’re doing is training advocates. Our board members Cynthia Zorn, Carol Arnette, and Sharon O’Shaughnessy have done a tremendous job working with the executive director Evelyn Honig to build and expand this program over the last five years. She worked with the Tourette Association of America to model our program off of theirs—we are incredibly thankful for the support in starting this program. In particular, Cynthia Zorn has really taken the program to the next level over the last two years. We’re teaching young people with narcolepsy to be advocates for themselves, and to go out in their communities and educate people at their schools and their friends. These new advocates are doing a slew of activities in-person and online creating shareable content. What we want to do next is build out these programs for other age groups.

Organization’s strategy: We have become more involved in the rare disease space over the last few years. Meeting, partnering, and learning from folks in other rare disease organizations has been a key strategic move for us. We want to bring on board members who have different experiences in different areas—people from a variety of backgrounds that can augment each other’s skills. There’s a couple of key things that I think we can impact by spreading awareness—by helping people understand what narcolepsy is. I think that we can impact the time to diagnosis, which is currently somewhere between 10 to 15 years. That’s how long a person with narcolepsy goes undiagnosed on average—it’s crazy. Raising more awareness will also help to increase the percentage of people who are diagnosed. Can we move the needle from 25 percent to 50 percent? Can we then get that to 75 percent? We’re also always looking to expand treatment options and met with the FDA a few years ago to argue for more treatments on behalf of our community. We can make a serious impact on some of these numbers by increasing our advocacy efforts. I can advocate as one person—but I want to train a hundred people to advocate for our community.

Funding strategy: We are a membership-based organization, so we have membership dues. When people help fund our organization, they help us cover our operational costs. We get a lot of grants from our pharmaceutical partners—there are five or six of them. We’re always striving to diversify our sources of funding, especially by increasing the number of pharma companies with which we work. We made a big push in the last year to try and increase our unrestricted funding so that we can do more with the funds that we have; so that they’re not restricted to a conference, or this event or that event. We’re also always pursuing new avenues of grant money. We get some federal funds and our community powers a lot of donations through Facebook. This is the third year now that we’ve been in the New York City Marathon. That’s a significant source of funds—we have raised more than $100,000 through that.

What’s changing at your organization in the next year: We’re doing a lot of virtual stuff now, and the staff has done a tremendous job pivoting to virtual. A lot of the bread-and-butter events have been in-person events for this organization. We’re going to do a blend of virtual and in-person. The biggest changes will be figuring out how we can expand our advocacy program. Our next step in that goal of getting to an adult program is to bring in the parents of the youth in the youth ambassador program, and get them trained. I’m confident that our new board officers will have success with these initiatives.

Management Style
Management philosophy: I try to practice servant leadership: get people up for success, give them the tools that they need to be successful, and then get out of their way. Let them run with their mandates! It’s important to have everyone aligned on the mission—from what we do in an overall sense, to why we’re pursuing a specific project. Alignment is absolutely key. I’m also very data driven—I’ve really been pushing the organization and the board to be data driven.

Guiding principles for running an effective organization: Knowing what your organization is good at and playing to your strengths is important. Because we all have limited resources, limited funds, and limited time to figure out what our strengths are. Strategic planning is important too. Where do you want to be in a year? Where do you want to be in three years or five years?  You have to work backwards from that to figure out your staffing needs. For example, Narcolepsy Network has traditionally had a working board. One of my goals has been to move us to more of a governing board. How do you do that? You have to hire more staff, but you have to be strategic about it, and figure out how to spend your dollars wisely.

Best way to keep your organization relevant: Being adaptable. A pandemic is a great example. If you are an organization that does in-person events and you haven’t pivoted to virtual events, you need to do that now. Things change rapidly these days. We’re always working to improve our social media presence. There’re new channels of distribution for information. There’re new ways to reach people. You have to be willing to change and adapt—and in some cases move on from ways of communicating with people that you have in the past.

Why people like working with you: I’m empathetic. I strive to understand where people are coming from, and what their motivations are. I’m a team player. I do my best to set people up for success. I care about my organization, our network, and its success. Sometimes the things that you want to do don’t necessarily align with what the organization needs—you have to keep the organization’s best interests at heart. As board members, we have robust debates, but we always move forward together as a team when a decision is made. It’s the only way.

Mentor: I have two mentors from my design career. Gabe Kean, and one of my professors from college whose name is Bill Klingensmith. They both helped me mature, grow, and pushed me in terms of my design career. I always tell people to try to find mentors. They’re hard to come by—you might only have a few in your life. Those two stick out as being some of the best mentors I’ve had.

On the Job
What inspires you: What inspires me is knowing that what we do is impacting a ton of people. Our membership was a little bit down this year but has recovered nicely with some recent changes spearheaded by our Board member Rajeev Sachdeva. We have over 600 members, and we have a Facebook group of about 14,000 people. I think we have about 7,000 people on our mailing list. Those are some of the numbers within our community, but there’s around 200,000 people in the United States who have narcolepsy. There are obviously millions more around the world. The opportunity to build, serve, and lead this Board team has been a blessing. I know that what I’m doing, and what our team is doing, is impacting people’s lives every day. And that’s an awesome feeling—that’s why I do this.

What makes you hopeful: One of the leading researchers, Emmanuel Mignot at Stanford, spoke at our conference a few years ago and said he is optimistic there may be a cure for narcolepsy type 1 in the next ten to 15 years or so. I’ve never heard anyone say anything like that. It tells me that the leading researchers out there feel that they are closing in on potential solutions to treat the root cause, not just the symptoms. They know the cause of cataplexy—it’s the loss of a neurotransmitter in your brain called hypocretin. They seem to be closing in on different ways to replicate it or trick your brain into thinking it’s there. There may be a light at the end of the tunnel. For people like myself who don’t have cataplexy, the causes are not clearly understood—but I know that there’s a lot of great people working on these issues. And I would say that the pace of research has accelerated in the last decade or two. There’s a lot of new medications coming out now that treat the symptoms, but researchers are also working to get closer to a possible cure.

Best organization decision: One of the best decisions since I’ve been involved in the organization was the decision to hire a second full-time employee—Christine Hackenbruck is her name. She’s our executive assistant, and this is her second year with the organization. Our executive director was the only full-time employee for about a decade, and we had several part-time staff members. Christine’s presence has allowed our executive director to focus on other things, and it’s allowed us to expand our programming dramatically.

Hardest lesson learned: We participated in a program a few years back with a partner organization that refused to share some important data with us. We didn’t understand how effectively our money was being utilized, and so we ultimately had to end that partnership. That was a tough lesson, but we learned that when you have a partnership, there needs to be transparency, and you need to be aligned in terms of how that partnership is going to work.


Toughest organization decision: We’re membership based. When people become members and pay their dues, they help fund all the things we do. About two years ago we introduced four member levels, raising the entry point from $40 to $50. Our challenge is to ensure that we provide value for those dues, but also to make an emotional connection with people. When you’re a membership-based organization like Narcolepsy Network, you have to clearly communicate why someone should become a member. Why should they become an advocate member, or a leader level member? The real challenge for us is to get people to give, not because of what they get, but because they want to—because they see the impact that we’re making in people’s lives. We could always do a better job with that, and our team is working hard to do just that.

Biggest missed opportunity
: We’ve had a couple of instances of someone in the media, someone prominent, will make a joke about narcolepsy. We need to have a response to that. I would say that this is an area for improvement, and it’s something that we’ve talked about in the last year. The missed opportunity is that we have not developed a campaign to respond to that yet—but the good news is that it’s on our radar and we’re serious about developing one.

Like best about the job: Working with the awesome people who Sharon (my vice president for the last two terms) and I have recruited to the board. We’ve added a ton of great people, and I enjoy working with my fellow board members. We have a passionate team, and it’s improved quite a bit over the last few years in terms of cohesiveness and our ability to execute.

Like least about the job: I would say my least favorite thing is being forced to make a decision where you don’t have all the data you need. That’s tough in any context, but it’s especially tough with a nonprofit because you’re working with people’s money that they have donated, and you want to be a good steward with the funds that you’ve been given. That’s always a challenge. You just gather as much information as you can to make an informed decision.

Pet peeve: Meetings without agendas.

First choice for a new career: I’ve worked in a number of startups, and I’ve also started my own company. I’d like another crack at doing that, but maybe I’ll wait until my newborn can sleep through the night to tackle that one!

Personal Taste
Most influential book: What You Do Is Who You Are: How to Create Your Business Culture by Ben Horowitz and Henry Louis Gates Jr.

Favorite movie: The Shawshank Redemption

Favorite music: Marina and AJR. In 2020, I find myself listening to a lot of happy music.

Favorite food: Beyond burgers. I’m a vegetarian.

Guilty pleasure: Having free time. I have a newborn son, a seven-year-old daughter, and a full-time job.

Favorite way to spend free time: Going for a run. It’s good for the soul and good for your mind. I’ll often find myself thinking through problems when I’m out running—and getting exercise feels good.

Stay Connected

Sign up for updates straight to your inbox.