Hi everyone! I’m so happy to share a very exciting collaborative project that I had the honor to participate in a few weeks ago. I was a panel speaker on the Duke Margolis-FDA virtual public webinar on the topic Advancing Drug Development for the Prevention of Preterm Birth.

I was not the only NICU parent who participated in this highly important webinar. I was joined by Deb Disenza of the Preemie World Foundation, and Ashley Randolf-Cooley of the Alliance of Black NICU Families, and my close colleague and friend Wakako Ecklund, a NICU nurse practitioner who is consistently advocating for the rights of NICU babies and families. 

In the United States, spontaneous preterm birth (sPTB) is the leading cause of infant mortality, with 1 in 10 babies being born preterm. Despite the significant impact and medical need, there are currently no US Food and Drug Administration (FDA) approved treatments for the prevention of sPTB. Duke-Margolis, under a cooperative agreement with the FDA, hosted this public virtual workshop on Advancing Drug Development for the Prevention of Spontaneous Preterm Birth. The workshop brought together a multidisciplinary group of experts and individuals with lived experiences, to generate ideas and discussion around the challenges in developing and studying products to prevent preterm birth. Within the workshop, speakers covered the current landscape, challenges, and perspectives on preterm birth and expert panels discussed the ethical, regulatory, and efficacy measurement considerations for clinical development programs for products intended to prevent preterm birth.

This was a 2-day workshop, so there is a plethora of information and perspectives to learn from. Please take a few moments to click below and watch our segment from the first day, but do not forget to watch the remainder of what was presented earlier and on the next day. 

You can watch it by clicking HERE.

It’s so important for NICU parents to share their lived experiences on podcasts, webinars, etc., so that other NICU stakeholders (physicians, nurses, therapists, researchers and political figures) can use our voices as they create policies for babies and families. 

Please share this webinar with those who work in medicine, research or industry, so that we can continue to ensure the voices of our tiniest patients and their families are heard.

Thank you.