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 is a form of emotional and practical help from somebody who has lived through a similar experience and who is trained to offer support.
Everyone’s situation is unique but being able to turn to someone who has faced similar challenges makes navigating the journey of disease diagnosis, treatment, and management less isolating.
You don’t need to walk the path alone.
Our peer support specialists are available virtually to listen to you, encourage you, and help you find the resources you need.
Please note that we are not medical professionals, so we can’t review any diagnostic tests or provide medical advice, and we don’t give financial support.
Please Note: We are not medical professionals and cannot review any diagnostic tests (like EEGs) or provide medical advice.
Meet Our Peer Support Specialists
CNF has peer support specialists that know what it is like to have a child with a neurologic condition and all of the things you are going through. We believe that even if parents have children with different diagnoses, they still often share very similar experiences. Check out the videos below to learn more about us!
Kathy Leavens, CNF peer support specialist
“In my journey as a mom of children with medical needs, I found that I was also my own researcher and educator. I had time in between seizures or treatments, and time in waiting rooms, to search for answers to the questions I was facing.
I asked myself one question over and over: ‘Where is the person who has done this before me?’
As I gained life experience, I promised myself that I would be the person to lend a hand to someone else.”
Brad Thompson, CNF peer support specialist and Licensed Professional Counselor – Supervisor (LPC-S)
“We know how long your to-do list is as a family and we know how frustrating and discouraging it can be to run into a bunch of dead-ends and information that is no longer useful or valuable.
So, we do everything we can to make sure that the information and the groups of people we are connecting you with are on the front-end of the battle as well.
The other thing that we promise to offer you is a relationship.”
Frequently Asked Questions About Peer Support
What is peer support?
Peer support is emotional, relational, and practical support from someone who has had similar experiences navigating the journey of disease diagnosis, treatment, and management for a child living with a neurologic condition.
How can peer support help me?
Peer support is a powerful opportunity to get advice and mentorship from someone who has real-life experiences similar to what you may be facing. We have a trained counselor on staff that trains our peer support specialists to help you with what you need in the moment — whether you’re coming to them for advice on your next steps, looking for guidance with a specific challenge, or you’re simply needing to voice your fears and stresses to someone who understands.
Where is peer support available?
Our peer support program is virtual, we connect with caregivers initially via email and then are able to have phone or texting conversations. This gives us the ability to provide support to people all over the world. We’ve helped families from more than 70 countries around the world and all 50 states in the United States. Depending on where you are located, we may even be able to connect you to more local resources.
How much time does it take?
Peer support takes as little or as much time as you want. Our program is virtual which means you can reach out to us at any time. Our peer support specialist are generally able to respond within 24 hours and can schedule regular check–ins.
What kind of questions can I ask?
There are no wrong questions. We might not always be able to give you the answer you’re looking for straight away — in some cases, there may not even be a single right answer — but we’re here so you don’t have to look for the answers alone.
Please note that we can’t provide medical advice.
Do I need to pay for this service?
No, our peer support is free of charge.
How do I contact a peer support specialist?
Fill out our website submission form with some details about who you are and what you need. One of our peer support specialists will follow up via e-mail within two business days.
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.
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.
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.
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.