Rare Leader, Jennifer Canvasser, Founder, NEC Society

The Basics
Name: Jennifer Canvasser

Title: Founder and director

Organization: NEC Society

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Disease focus: Necrotizing enterocolitis (NEC) is an intestinal disease that primarily affects premature and medically fragile infants. NEC causes an inflammatory process that can lead to intestinal tissue damage and death. Despite significant advances in neonatal care, the morbidity and mortality rates associated with this disease have not significantly improved in decades. In the United States alone, thousands of babies develop NEC each year and hundreds of babies die from this complex intestinal condition. Once diagnosed, many babies only live for a few hours or days, and survivors can have lifelong neurological and nutritional complications.

Headquarters: Davis, California

How did you become involved in rare disease: I became involved in the rare disease community after my son Micah died from a rare disease just before his first birthday. He developed necrotizing enterocolitis (NEC), which is a severe disease of gut inflammation, when he was about six weeks old. Micah died from complications of NEC when he was 11 months old. Prior to Micah’s passing, I was working in the nonprofit world, and after he died, I wanted to do something that was more related to necrotizing enterocolitis and families that are in the neonatal intensive care unit. I looked around to see who was doing this work, and I was shocked to learn that in 2014 there was no one bringing everyone together around necrotizing enterocolitis and empowering patient-families to get involved in research and partner with clinicians and researchers. That’s how the NEC Society was born.

Previous career: Community organizer for the Ecology Center, a nonprofit environmental organization

Education: B.A. in developmental psychology from the University of California, Los Angeles; Master’s degree in Social Work (MSW) with a concentration in community organizing from the University of Southern California; currently working toward a Ph.D. in sociology at the University of California, Davis

The Organization
Organization’s mission: Our mission is to build a world without necrotizing enterocolitis.

Organization’s strategy: Our strategy is to advance research, create a sense of urgency, and empower families and clinicians with more information about the disease. We bring together diverse stakeholders who are committed to improving outcomes for our most vulnerable infants. 

Funding strategy: We are currently funded by patient-families who have been directly affected by necrotizing enterocolitis, the Patient Centered Outcomes Research Institute (PCORI), and the Chan Zuckerberg Initiative’s Rare As One Network.

What’s changing at your organization in the next year: We are fortunate to have just received capacity-building awards from the Patient Centered Outcomes Research Institute and the Chan Zuckerberg Initiative. In addition to several other projects, we’re building our capacity so that we can advance research that’s meaningful to patients.

Management Style
Management philosophy: I strive to empower everyone who’s involved in the NEC Society and encourage them to take ownership and see this organization as their own organization. I wouldn’t call myself a “manager.” I don’t aim to manage anyone. My goal is to facilitate, guide, and lead as effectively as possible.

Guiding principles for running an effective organization: Staying laser-focused on our mission and vision of why we’re doing this work. We keep babies and families front-and-center at all times. They inspire us to be strategic, effective, and efficient.

Best way to keep your organization relevant: Listening and being responsive to the needs of our stakeholders and community, especially the patient-families.

Why do people like working with you: I like to think of myself as collaborative, and as a team player. The NEC Society is not about me, or my son or family. It’s about all of us—it’s about building a world without this disease and improving outcomes for all the vulnerable babies and their families.

Mentor: I am fortunate to have many incredible people at the NEC society and in my community that I rely on every day. It’s hard for me to name just one mentor because there are so many people who are part of this work and who are integral in making the NEC Society possible.

On the Job
What inspires you: What we’ve accomplished in just a few years and what I know we can accomplish together in the coming years. And, of course, the families who continue to be affected by this disease are inspiring. Seeing how they honor their children and help us elevate the NEC Society’s vision. It’s inspiring to see people from all over the globe come together to build a world without NEC.

What makes you hopeful: Seeing so many people believe in this vision. That kind of goes into what I just said, but I think it makes me incredibly hopeful and inspires me to see people from all walks of life coming together from around the globe. We’re a U.S.-based organization, but now we have partners from around the world in many different countries. It’s inspiring to see so many people coming together under one cause and seeing their enthusiasm and motivation to support us and advance this work.

Best organization decision: Partnering with committed patient-families and renowned clinician-scientists. Also, investing the time to learn more about the Patient-Centered Outcomes Research Institute and the Chan Zuckerberg Initiative. Those decisions have been profoundly impactful and powerful for our organization. I have to emphasize our team culture at the NEC Society. We’ve been effective because it’s not about me or any other one person managing everyone and telling other people what to do. Our team collaborates and relies on each other. We are constantly aiming to grow and improve our work. Having that team culture has been critical to our success.

Hardest lesson learned: It’s been difficult but important for me to learn that not everyone who wants to do this work can. For example, we have a lot of families that come to us shortly after their babies have died and they want to get involved in the NEC Society. They may want to give back but then they find the process of becoming more involved can be overwhelming and painful. For me, a lot of this work is indeed painful, but I find it more satisfying and fulfilling than painful. But for a lot of families, it can be too painful to do this work, day-in and day-out, and to hear these devastating stories that are very similar to their own. I recognize that I am privileged to do this work, not everyone can, even when they deeply want to.

Toughest organization decision: It’s difficult to prioritize one thing over others. There are so many opportunities, projects, and ideas that we would love to pursue. It’s difficult to acknowledge our limited bandwidth and admit that we can’t do everything. It’s hard to set boundaries because we do want to help every family that comes to us with a need. Yet, we also have to recognize that we have boundaries and we can’t do everything. That’s difficult.

Biggest missed opportunity: We have been missing out on the opportunity to partner with industry. We’ve been hesitant because we don’t want to be perceived as biased or influenced, but I think there are ways to partner with industry and remain well-respected in the community. I won’t call that a missed opportunity, but I think it’s an opportunity that we have yet to explore.

Like best about the job: There are so many things that I love about directing the NEC Society. For example, I love giving back and knowing that I’m advancing the field and helping the NEC community. This is incredibly fulfilling and satisfying. I love it, beyond measure, but my absolute, most favorite thing is that it keeps me close to my son, Micah.

Like least about the job: Having to deal with the nuts and bolts of running a nonprofit organization—the finance and the admin, for example—everything that it takes to make the NEC Society function. There’s a lot of other behind-the-scene work that can be tedious and less exciting, but critical for the organization’s growth and sustainability.

Pet peeve: It drives me crazy when individuals or groups in the NEC community don’t collaborate. We should be building each other up and exploring how we can best complement each other’s work. This goes for any rare disease community. We are such a small group of people and we’re all trying to do what’s best for babies and their families. There’s no room for tension or drama. We all need to collaborate and build each other up.

First choice for a new career: Leading the NEC Society is my dream job. I am honored, privileged, and compelled to do this work.

Personal Taste
Most influential book: Becoming by Michelle Obama

Favorite movie: RBG

Favorite music: “Micah music” – it’s a playlist of songs that we listened to with Micah while he was in the intensive care unit.

Favorite food: Fruit picked right off the trees in our own backyard.  

Guilty pleasure: I love running. I’m a marathon runner, so long runs with loud music is my (not-guilty) pleasure.

Favorite way to spend free time: In my free time, I love exploring nature and being outside with my family.