NEC Awareness Month
From Pain to Power
May is NEC Awareness Month, and May 17 is NEC Awareness Day.
Science is essential to our vision of a world without NEC, but it takes an average of 17 years for research evidence to reach clinical practice. We chose the 17th of May because we cannot wait 17 years for today’s emerging NEC research to reach our babies in the NICU. We need to prevent NEC now. We need a world without NEC today.
Our motto, “from pain to power,” recognizes the profound heartache and trauma that follow a NEC diagnosis, and the remarkable strength it takes to channel anguish into helping other families.
In honor of #NECday on May 17, please show us how NEC has impacted your life and consider making a donation to support the NEC Society’s work.
If you’re ready for your state to recognize NEC Awareness Day, here’s how to make it happen:
1. Submit this form so we can connect you with others in your state.
2. If you have been personally affected by NEC, consider joining our NEC Society Connects Facebook group, where you can share your story and connect with others.
3. Wait 48 hours for the NEC Society team to check if there are others in your state working to pass a NEC Awareness Day Resolution. If there are others in your state, we will connect you via email so you can work together on steps 4 – 6. If you’re the only one in your state, that’s okay, you’ve got this! Please proceed solo, and know we are here to support you!
4. Use the outline below to contact your state representatives and/or senators. You can find your state representatives and senators by clicking here.
We encourage you to personalize your message and share a brief overview (2-3 sentences) of your story and why you’re committed to building a world without NEC.
We encourage you to begin with a phone call to your elected official’s office. Emails and letters are easier for them to ignore. You may need to call multiple times. Your kindness and persistence will go a long way.
Once you have your elected official’s office number, and you’re ready to call, here’s an outline of what you can say over the phone, or put in a written message, or share in virtual or in-person meetings:
Hello, my name is (name).
I am a constituent and live in (city). I am reaching out to you about necrotizing enterocolitis, also known as NEC. NEC is a devastating intestinal disease that can affect premature and medically fragile infants during their first weeks and months of life. Can you please connect me with Representative/Senator _____’s Health staffer?
(Be sure to get the Health staffer’s name and email address. Once connected with the Health staffer, share the following…)
Hello, (Health staffer’s name). I have teamed up with the NEC Society, the world’s leading NEC-focused nonprofit, because May is NEC Awareness Month, and May 17 is NEC Awareness Day. You can learn more about the NEC Society at NECsociety.org. In 2023, California passed a resolution to recognize NEC Awareness Day. I would be deeply grateful if you would please help me do the same in our state.
Can we find a time to meet so I can share how NEC has affected my life? I’d love to tell you more about NEC Awareness. (See the California Resolution language. Proceed to schedule a time to meet).
I look forward to working together to pass a resolution and raise awareness about NEC so other families in our state never experience the devastation of this disease. Thank you for your time, and I look forward to seeing you on (date and time of confirmed meeting)
5. Keep the NEC Society posted on your progress and questions or challenges. If you are invited to go to your state Capitol, let us know as soon as possible so we can send you materials, explore the possibility of sending our NEC Society team members to join you, and document your success!
6. All states are different, and NEC Awareness Day Resolutions will be easier to pass in some states than others, and there are different paths to the same outcome. It took about 2.5 months from the first outreach email to the passage of California’s NEC Awareness Day Resolution. All states are different, and some states will move slower or faster than others.
7. The keys to success in this effort are persistence, adaptability, and sharing your story to inspire hope as well as a sense of urgency – show them they can help make a real difference for babies and families! And remember, your NEC Society community is with you all the way!
Thank you for working to build a world without NEC!
