We held our first ever in-person Neonatal Family Research Advisory Council(NFRAC) meeting held on Monday , November 18th at the Waisman Center. We had a great meeting with three family participants, several of our medical team members, and even three undergraduate students who had the opportunity to observe and participate.
To start the night Dr. Gillick gave a great presentation on her current research study that is the culmination of a career’s worth of projects and learning from families/participants. Next, despite the rainy, cold, and dark outside weather – inside we had a warm and bright discussion about incorporating parent/family input into the research process at different stages. Throughout the night we heard very clearly that parents and families are a part of NFRAC to try and improve outcomes so other parents and families don’t need to experience what they have gone through – or at least make it easier.
We finished the meeting discussing a few important things:
- NFRAC will continue next year, and we will continue to have funding to support family/parent participation thanks to the Meriter Foundation!
- We will plan to have a similar cadence of meetings – every other month, primarily virtual, with some work/thinking to be done between meetings.
- We hope to have a renewed push for recruitment of other families/parents and would like to reassess our recruitment materials at the January virtual meeting.
Thank you very much to those that were able to attend – we missed those that were not able to and hope to see you at future meetings!
If you are a family interested in being a part of the NFRAC please reach out to us! pnl@waisman.wisc.edu
