Description:

Parents of medically complex children have to make a myriad of decisions, big and small, every day. Understanding how you process decisions, and recognizing how your child’s providers support your decisions can help mitigate feelings of overwhelm, fear of regrets, and create an environment where decisions can feel shared.

In this session, you will also learn about NeuroJourney, an educational tool by Courageous Parents Network that provides anticipatory guidance and supports decision making for families caring for a child with a severe neurological impairment.

SPEAKER:

Jennifer Siedman, MEd
Courageous Parents Network
Director of Community Engagement
https://courageousparentsnetwork.org/

Jennifer brings her experience as an educator and development professional to her role in engaging patient and caregiver organizations, industry partners, and healthcare clinicians. A bereaved mom, she serves as president of Ben’s Dream: Sanfilippo Research Foundation. She has worked with researchers and patient advocacy groups worldwide to fund and advance gene therapies to the clinical trial stage. In addition to co-authoring Supporting Families Considering Participation in a Clinical Trial, she has been recognized with a Boston Celtics Heroes Among Us award, Global Genes RARE Champion of Hope, and Sanofi TORCH Award. Jennifer received her MEd in middle school education from Lesley University.

Courageous Parents Network (CPN) is a nonprofit that provides curated digital resources and programming to help caregivers navigate the illness journey with support and a sense of community. NeuroJourney is an educational resource developed by CPN for families and clinicians navigating the needs of a child with severe neurological impairment (SNI).

Courageous Parents Network https://courageousparentsnetwork.org/
NeuroJourney https://neurojourney.courageousparent…