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Oct. 9, 2020

TOPIC: Featured News, Patients & Members, Head of the Herd

Head of the Herd: Jennifer Canvasser, Founder and Director, Necrotizing Enterocolitis (NEC) Society

Posted by Valaree DonFrancesco

At the Head of the Herd is… Jennifer Canvasser, Founder and Director, Necrotizing Enterocolitis (NEC) Society

Jennifer advocates for those affected by… necrotizing enterocolitis (NEC)

Jennifer is located in… Davis, California

Jennifer most frequently checks her… Twitter page

How Jennifer got here… My son Micah developed NEC when he was six weeks old. He endured multiple bowel resections which left him with short bowel syndrome and a host of other complications. Micah came home but tragically died just before his first birthday from complications of NEC.

How Jennifer’s previous work experience lends itself to her work in the rare disease community…  Prior to founding the NEC Society, I worked as a community organizer for an environmental nonprofit organization. I have a master’s degree in social work with a concentration in community organizing. Both my educational background and experience working in the environmental nonprofit world have shaped my work as the founder and director of the NEC Society.

What the NEC Society is hoping to accomplish this year… We are working to prioritize the NEC research agenda while also providing the NEC community with meaningful ways to connect, engage and learn during the pandemic.

How Jennifer sees the NEC Society changing in the next five years… In five years we hope to have a patient-led research network in place, as well as the ability to accelerate NEC advocacy and education in impactful ways.

How the NEC Society is supporting diversity, equity and inclusion (DEI) efforts…  Our team has learned that our commitment to DEI must be an intentional, constant, and consistent process. We use our Inclusivity Policy as our guide. For our team, it is critical to intentionally amplify the voices and needs of women, diverse groups, and individuals with rare or unique experiences. Not only is it the right thing to do, but many of these groups are disproportionately affected by rare diseases like NEC due to systemic racism and unconscious bias. By uplifting these voices, we advance our shared vision of building a world without NEC. We recently shared a blog about our efforts:

Jennifer’s Dos and Don’ts for running an effective organization… Do build a collaborative, cohesive team, and run the organization as a team effort. Don’t try to do everything yourself.

How Jennifer remains hopeful… Hope is our only choice. We must believe in our vision of a world without necrotizing enterocolitis. Our dedicated team of patient-families and clinician-researchers who are so committed to improving outcomes for babies just like Micah keep me hopeful.

How Jennifer is taking advantage of NORD member resources… I received a scholarship to attend the 2020 NORD Summit! It will be my first NORD meeting and I am thrilled to have the opportunity to participate.

Where Jennifer developed her leadership skills… I served as a community organizer for the Ecology Center for five years before I founded the NEC society, and I was fortunate to experience and witness effective leadership in that role. I took everything I learned about leadership from the Ecology Center and have applied it to the NEC Society. I’ve focused specifically on the importance of empowering all team members, giving and receiving feedback, and growing together as a cohesive, diverse team.

Jennifer’s words to live by… “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” – Margaret Mead

If Jennifer found a cure for NEC and had to find a new mission… I’d love to return to my work as an environmentalist! I am passionate about sustainability and healthy living.

The last book Jennifer read is… I Have Something to Tell You by Chasten Buttigieg

In her free time, Jennifer enjoys… running and enjoying Tahoe with my family.