The Power of Progress: Our Impact Reports Through the Years
Explore our milestones and how we are working together to build a world without NEC.
Grace
A message from our Founder
Our Impact in 2024
10 years of building a world without NEC
It is remarkable and inspiring to reflect on the NEC Society’s 10th anniversary and all we achieved together in 2024. When my son, Micah, passed away from NEC, there was no community, inspiration, or hope – there was only the devastation of this cruel disease. Together, we have built an international community and inspired people around the globe to join our movement. The NEC Society is our brightest pathway toward a world without NEC. We are so grateful to everyone who believes in our work, and I cannot wait to see what we achieve together in 2025 and beyond!
Jennifer Canvasser, Founder & Executive Director
Advancing research to build a world without NEC
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NEC Research Incubator
The NEC Society Research Incubator has grown to over 150 members. Our incubator is made up of physicians, scientists, multidisciplinary clinicians, and patient-families from all over the world.
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Published in Pediatric Research
We participated in the Convergent Working Group at SickKids Hospital in Toronto, Canada to discuss regenerative medicine therapies in NEC. A published summary can be found in Pediatric Research.
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Identifying Research Needs
We played a leading role in the National Institute of Child Health and Human Development’s Working Group on NEC and identified urgent research needs for our community.
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New Research Awards
The NEC Society launched three new research awards to inspire and support young scientists and early career clinicians dedicated to helping us build a world without this cruel disease.
Improving Education to Build a world without NEC
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Educational Meetings
We presented in Washington, DC, to the FDA, CDC, and NIH about the urgent need for improved NEC prevention at their workshop on Live Biotherapeutic Products to Prevent Necrotizing Enterocolitis.
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Educational Meetings
At the Pediatric Academic Societies Meeting, we presented a 7-hour Session on NEC, the NEC Club, NEC Networking, and NEC Advocacy Table, inspiring hundreds of new clinicians and scientists to join our community.
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Patient-Family Materials
To support the NEC Biorepository, we developed Patient-Family Educational Materials because we are dedicated to empowering families with information so they can advocate for their children.
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SXSW with Katie Couric
We were featured at SXSW with Katie Couric about how our patient-families and researchers are partnering to prevent NEC and improve outcomes for infants.
Increasing Advocacy to Build a World Without NEC
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NEC Awareness Day
Our Board member, Stephanie, and her family led the effort to get New York to declare May 17 as NEC Awareness Day in honor of her daughter Luna, who tragically passed away from NEC.
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Featured in leading outlets
Several media outlets, including the Chicago Tribune, highlighted our expertise and perspectives on the devastation of NEC, and the need for more protective care practices. Read our latest statement on the protective properties of human milk here.
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Met with 30+ Elected officials
The NEC Society met with 30+ elected officials throughout 2024. We are urging local, state, and federal leaders to help us raise awareness about NEC and advance policies for equitable care in NICUs.
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Improving Access to Donor milk
Our Board member, Nicola, testified before the California Senate Health Committee to increase equitable access to human milk for infants in California NICUs in honor of her son Ronan, who tragically passed away from NEC.
Engaging Community to Build a World Without NEC
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Running26.2 to #preventNEC
Twenty-six runners completed the California International Marathon in honor of babies affected by NEC. In total, 114 runners have run 26.2 for the NEC Society!
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Community Events
Dozens of families, like Lyddia and Glenn, whose son Rex tragically passed away from NEC, organized community events and fundraisers to build a world without NEC.
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Running around the world
Infant Bacterial Therapeutics, one of our Champions, ran the Stockholm Marathon for the NEC Society.
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NEC Awareness is may 17
Clinicians and families around the world recognized NEC Awareness Day on May 17th.
Thank you for an impactful year!
“Amidst my devastation, purpose has emerged – a determination to transform my pain into a beacon of hope for others. In honor of my daughter, I am helping the NEC Society build a world without NEC. My work with the NEC Society is a testament to her enduring legacy, a tribute to the love that transcends time and space.”
Pabita, Ditya’s mother, NEC Society Patient-Family Advisory Council
Previous Reports
For detailed financial information, you can access our 990 Forms from 2019 through 2023.
Questions or need more information? Please reach out to Julia Goldstein, Development Director, at Julia@NECsociety.org
