Family Support & Empowerment Program (FSEP)

The Child Neurology Foundation strongly believes that for children with neurologic conditions to thrive, families and caregivers must receive support. In order to help meet the needs of those walking the journey with their child, we established the Family Support and Empowerment Program to deliver resources and tools that empower caregivers to live healthier lives. Below is a review of the various resources that are available.

Direct Support for Caregivers

Peer Support

FSEP offers families a direct connection with an experienced, compassionate Peer Support Specialist to help navigate the journey of disease diagnosis, treatment, and management for a child living with a neurologic condition. FSEP’s Peer Support Specialists are trained to listen to you along this emotional journey without judgment. Along with offering relational support, Peer Support Specialists seek to empower families by sharing sound information and helpful resources.

As of the end of 2019, our peer support touched the lives of over 700 families from 71 countries and all 50 states. Peer support specialists are available virtually via our website submission form using the button below:

CLICK HERE TO CONTACT OUR PEER SUPPORT PROGRAM

Please Note: We are not medical professionals and cannot review any diagnostic tests (like EEGs) or provide medical advice.

Health Care Provider Information

If you’re a health care provider, you aim to provide truly comprehensive, family-centered care for your patients and families. Think of FSEP as a partner in achieving family-centered care and as a trusted resource. FSEP’s Peer Support Specialists are willing to help answer some of the more emotional or lifestyle questions families may have as it relates to their child’s neurologic diagnosis. Please offer FSEP support services to your patients and families.

Want to recommend to your patients? Feel free to print our reference document or contact us at programs@childneurologyfoundation.org to receive free printed postcards to hand out.

Respite Care

Respite care is the temporary care of a patient, providing relief for the usual caregiver. It’s imperative that caregivers receive the reprieve they need to recharge and take care of their needs. CNF created a respite care notebook as a way for a caregiver to document everything required to care for their child. The notebook is available in hard copy and is accessible to the public from our respite care webpage, access using the button below.

RESPITE CARE NOTEBOOK

Peer Support Education for the Larger Child Neurology Community

CNF is proud to offer peer support to families in our community. At the same time, it’s important to build a larger peer support network so that caregivers have the opportunity to connect with individuals whose journey is similar to their own. Having a network of peer support workers with different lived experiences, different needs, in different locations, whose children live with different conditions, is vital to the child neurology peer support community.

Building a peer support network can be a complicated process. It’s for this reason that the Child Neurology Foundation provides education for other advocacy organizations about how to create and sustain a peer support network of their own. This is done in a variety of ways:

In Person Workshops

CNF hosts an annual workshop to bring child neurology focused organizations together to learn about building peer support programs and networking to learn best practices.

2020 Peer Support Workshop information will be announced when available.

Webinars

In 2020, CNF will produce multiple easily digestible webinars that directly address the community’s needs for education. They will be designed to promote dialogue in the community and move all organizations forward towards providing the best support possible to families.

Facebook Group

An indispensable way for CNF to support the child neurology community is for us to bring everyone together to share their experiences and learn from each other. Based on feedback from our 2019 Peer Support Best Practices Workshop, in 2020 we have established a closed Facebook group for advocacy organizations to join to have discussions with each other and share resources. Networking and coming together to raise each other up is one of the strongest tools we can use to help children and families impacted by a neurologic condition. At this time, this is a private, closed Facebook group for those who have previously done peer support training with the Child Neurology Foundation.

CNF thanks our 2020 partners - Greenwich Biosciences, Ultragenyx and the Winokur Family Foundation - for their support.