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.

The role of the Parent Partner Advisory Panel is to advise the study investigators on:

  1. Study design and data collection
  2. Data interpretation
  3. Dissemination efforts to improve awareness and care

This collaboration is key in shaping NSR's research and impact.

Life brings us gifts. It is my duty to share my gift with the research community to move knowledge and understanding forward, which ultimately improves the quality of life of other children and families

Lisa Grossbauer

Parent Partner, Children's Hospital of Philadelphia

 

Meet Our Community Partners 

A purple flower with a yellow center, surrounded by the text "Casey's Circle" in a circular frame.

 

The image shows the "Hand to Hold" logo with the tagline "NICU Babies - Parent Support" in green, alongside a stylized "H."

The words "HOPE for HIE" in white text on a blue background.

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. 

Hand to Hold helps families before, during, and after a NICU stay. 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 global community and non-profit dedicated to improving the quality of life for children and famlies affected by Hypoxic Ischemic Encephalopathy (HIE) through developing more resources, education and support for families.