Necrotizing enterocolitis (NEC) is a devastating disease that primarily affects premature infants and is one of the leading causes of death in the NICU. When current senior Ella Hall began her summer with the NEC Society through the Summer Immersion Grant Program, she wasn’t sure what her voice as an advocate might sound like. By the end, she had not only built tools to support families facing NEC, but also found herself speaking with conviction on Capitol Hill—reminded that advocacy is powerful when it is patient-centered.
Advocacy in Action: Finding My Voice with the NEC Society
"When I began my summer with the NEC Society, I was eager but unsure of what my role as an advocate could look like. I knew that necrotizing enterocolitis (NEC) is a devastating disease affecting primarily premature infants, and is a leading cause of death for babies in the NICU. I also knew that I could never understand the impacts on families who it affects. Through the Summer Immersion, I discovered that advocacy comes in many forms and I could help these patient-families in many different ways, sometimes through research and policy, through behind-the-scenes organizational work, and through amplifying the voices of patients and patient-families.
Because the NEC Society is a small nonprofit organization, I quickly learned that everyone wears many hats. One day I was transferring videos to new platforms, the next I was providing tech support, and the next I was compiling faculty bios for the NEC Symposium. These small, seemingly simple and routine tasks, taught me how much energy and attention to detail is required to keep a nonprofit running.
Some of my moments of pride came from what I was able to create to help patient-families. I created a NEC glossary, and I realized that making medical terms accessible helps to empower families. Families facing NEC deserve to understand what’s happening to their children, and making this glossary gave me a tangible way to support them. I was also asked to create reminders for the birthdays and death anniversaries of children who have died of NEC in the community. The initial idea overwhelmed our calendar, so I built an automated reminder tool. Coding is not my strength, but I figured it out, and it worked. In this way I was able to help the team reach out to bereaved families.
The most transformative part of my summer was traveling to Washington, D.C. to advocate for NICU babies at the NICU Parent Network Hill Day and NEC families. I attended 11 meetings with congressional offices, some alongside bereaved parents and neonatologists. At first, I was hesitant to speak, worried I might overstep as someone who has not experienced having a child in the NICU, but when a staffer questioned whether the NICU Baby’s Bill of Rights might encroach on the care team, I found myself speaking with unexpected confidence as I explained the difference between families dictating care and being meaningfully involved in it. This experience taught me when to step back and let others tell their story and when to speak up to ensure that those stories are heard and respected.
I will never forget the parents who shared their children’s stories during Hill Day. Their words visibly moved the staffers that we spoke to and reminded me that advocacy is most powerful when it is patient-centered. My role that day was not to overshadow them, but to encourage them, amplify their voices, and ensure their experiences were at the center of our conversations. I learned how to listen deeply to patients and patient-families and how to step into my own voice as an advocate. Even though the Summer Immersion Program has concluded, I am happy to say that I will continue to work with the NEC Society to improve research, education, and advocacy and help to build a world without necrotizing enterocolitis.
When I first began the Minor in Science & Patient Advocacy, I never would have believed I would be lobbying in Congress on behalf of NICU babies and families. Now, I know that patient advocacy and rare disease advocacy are where my passion and purpose intersect. I will carry the lessons I have learned this summer with the NEC Society forward into my career as a physician who listens to and advocates for my patients." -Ella Hall, Class of 2026
Advocacy in Action is a guest-authored reflection series from the Patient Advocacy Initiative that highlights how students are putting advocacy into practice beyond the classroom. Whether leading volunteer teams, building partnerships, or creating new resources, these stories showcase the impact students and alumni are making, and the lessons they’re learning along the way.