Peer Support

For children with neurologic conditions to truly thrive, their families and caregivers must also be supported emotionally. That’s where peer support can play a crucial role. 

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. 

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 diagnosesthey still often share very similar experiences. Check out the videos below to learn more about us!  

Kathy LeavensCNF 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

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 StatesDepending 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 checkins. 

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. 

 

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