PLATINUM2023

NECROTIZING ENTEROCOLITIS SOCIETY

Building a world without necrotizing enterocolitis

aka NEC Society   |   Davis, CA   |  www.NECsociety.org

Mission

The NEC Society is a patient-led 501(c)3 nonprofit organization that brings together patient-families, clinicians, and other stakeholders to build a world without necrotizing enterocolitis (NEC). The NEC Society is committed to advancing NEC research, education, and advocacy.

Notes from the nonprofit

Our work is deeply personal; we often meet patient-families in moments of raw crisis. For families who experience the devastation of NEC, our organization represents hope amid feelings of helplessness and a sense of community amid feelings of isolation. These families are our “why.” They drive and compel our work. Every day, more infants are diagnosed with NEC and too many do not make it home to their families. The NEC Society relies on donations from individuals and foundations. We have come so far. Yet, there is so much more that needs to be done.

Ruling year info

2014

Founder and Director

Jennifer Canvasser

Main address

140 B St. Suite 5 #128

Davis, CA 95616 USA

Show more contact info

EIN

46-4426455

NTEE code info

Alliance/Advocacy Organizations (G01)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

The NEC Society is the world’s leading charity focused on necrotizing enterocolitis (NEC). NEC is a devastating intestinal disease that affects vulnerable infants during their first weeks and months of life. The word “necrotizing” means the process of tissue death and the word “enterocolitis” means inflammation of the small intestine or colon. Each year, approximately 9,000 infants develop NEC in the US, and up to 40% of these babies die from the disease. Infants who survive NEC often struggle with lifelong complications. Despite NEC causing 1 in 10 deaths in NICUs across the country, relatively little progress has been made in understanding, preventing, and treating the disease. The NEC Society is equipping medical professionals with the information and resources they need to identify, prevent, and treat NEC.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

NEC Biorepository

The NEC Biorepository is essential to advancing the science that will lead to the development of novel diagnostic approaches and provides an opportunity to facilitate collaborations between multiple centers and expand the available number of patients, biological samples, and corresponding clinical data. The ultimate goal is to develop a biomarker or genetic test to predict a baby’s risk of developing necrotizing enterocolitis and offer preventive strategies against it.

Population(s) Served
Age groups
Health

The NEC Society Research Incubator fosters multi-center collaboration among clinicians and research scientists to accelerate research that is meaningful to patient-families.

Population(s) Served

The goal of this project is to determine research priorities for the NEC Community. The NEC Society has convened a panel of patient-families, researchers and clinicians to identify the most pressing and important research topics for the field, with a special focus on patient-centered outcomes research projects. We will disseminate our findings (via webinar and print) and produce project guidelines for other rare disease communities.

Population(s) Served

Families affected by necrotizing enterocolits (NEC) often experience feelings of isolation, along with a lack of resources and information about the disease. The NEC Society's Family Resource Packets contain up-to-date information about NEC and resources to empower, educate, and support families.

At limited neonatal intensive care units (NICUs) in the United States, a family whose baby was recently diagnosed with NEC or passes away from NEC can request one of our Family Resource Packets.

Population(s) Served

Where we work

Videos

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of convenings hosted by the organization

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with diseases and illnesses

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

Education is central to the mission of the NEC Society. Through webinars and our Biannual Symposia, we disseminate the latest information about research, best practices, and needs of the community.

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

The NEC Society’s mission is to build a world without NEC by advancing research, education, and advocacy
to overcome the inadequate treatment and prevention options that have thwarted progress for decades. The NEC
Society is a patient-led organization that works in direct partnership with renowned clinicians, researchers, and
other diverse stakeholders toward a world where babies never experience the devastation of NEC.

Advancing Research- The NEC Biorepository includes 8 research centers across the United States that
collect NEC-related human tissue samples. In this groundbreaking collaboration, centers are sharing these hard-to-acquire samples, accelerating the pace of NEC research.

The NEC Society’s Research Incubator advances science through knowledge sharing, collaboration, and research funding. The NEC Society is preparing to launch the NEC Registry, to collect data from patient-families affected by NEC. This information will help researchers better understand NEC and its long-term effects.

Education- The NEC Society organizes the NEC Symposium, North America’s only international scientific conference on NEC.

Since 2019, the NEC Society has hosted over 20 educational webinars for researchers, clinicians, and families. This webinar series shares the latest research and best clinical practices.

Resources for Families - The NEC Society provides resource boxes to families newly diagnosed with NEC or who have tragically lost their child to this disease. Our resources empower families with information and comfort when they need it most.

The NEC Society’s website provides evidence-based, compassionate information for families about the disease, as well as stories from families sharing their personal stories, which demonstrate the urgency of our work.

Financials

NECROTIZING ENTEROCOLITIS SOCIETY
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

NECROTIZING ENTEROCOLITIS SOCIETY

Board of directors
as of 02/09/2023
SOURCE: Self-reported by organization
Board chair

Rebecca Meuninck

Amena Mebane

Jenny Quinn

Lindsay Pollak

Adam Masin

Jolene Jacobs

Susan Perez

Noelle Sechrest

Samir K. Gadepalli

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 2/7/2023
info Candid has made improvements to the race and ethnicity options.

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

We do not display disability information for organizations with fewer than 15 staff.

Equity strategies

Last updated: 02/09/2023

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We use a vetting process to identify vendors and partners that share our commitment to race equity.
  • We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.