Parent Panel and Community Partners

Parent Partner Advisory Panel

From the beginning, NSR has included both clinicians and Parent Partners, who represent the interests of families with children who have experienced neonatal seizures. The Parent Panel is comprised of parents representing each study site as well as parents from our community partners. Parent and community stakeholders advise the NSR investigators on the concept, design, and conduct of the studies. The role of the Parent Partner Advisory Panel is to advise the study investigators on:

  • Study design, data collection methods and instruments, especially with respect to whether the items are relevant to participants, culturally appropriate, and easy to use
  • Interpretation of study data with respect to the lived experiences of, and meaning for, affected parents, families, and communities
  • Identification of opportunities and recommendations for sharing study findings to raise awareness and improve healthcare delivery for children with neonatal seizures and their families

This collaboration provides crucial insight for the aims and designs of NSR studies. 

Community Partners

Casey’s Circle is a nonprofit dedicated to helping families of children with special needs find ways for their kids to be kids first – patients later. This is done by providing tools, education, resources and opportunities to help improve the quality of life for medically complex children, their families and their providers, while also strengthening their circle of care.

Hand to Hold helps families before, during, and after a NICU stay and infant loss by providing powerful resources for the whole family, and most importantly, one-on-one mentoring from someone who has been there. Hand to Hold focuses our support, resources, and programs around four central strengths: 

1. Peer Support from Trained, Supervised NICU Graduate Parents

2. Whole Family Care (including Siblings and Grandparents)

3. Psychosocial and Emotional Support

4. NICU and Beyond: Antepartum through Childhood

Hope for HIE is a non-profit dedicated to fostering hope in families affected by Hypoxic Ischemic Encephalopathy (HIE) through awareness, education and support.