The Child Neurology Foundation (CNF) is a national non-profit that works to support the whole child neurology community. We are the only non-profit in the child neurology advocacy space that was started by physicians, and to this day we have strong physician leadership on our Board of Directors. We bring together the voices of parents and caregivers, patients, physicians, industry partners, and other advocacy organizations.
Our mission is to serve as a collaborative center of education and support for caregivers and their children with neurologic conditions. We envision a world in which all children living with neurologic disorders reach their full potential.
WE ARE CONVENERS
Convening is the name of the game at CNF. We tackle big bold issues for the child neurology community, and to do this, we know that we'll be stronger and go farther together. We bring together stakeholders from industry, patient advocacy, and healthcare provider communities to tackle overarching issues that face the entire child neurology community. Our convener model is based off of our Infantile Spasms Action Network (ISAN) that was established in 2016, which has grown to over 26 organizations speaking with one voice to raise awareness for IS. This methodology has the potential to be replicated in other disease areas with CNF as the convener.
WE ARE LISTENERS
We believe in the power of listening and storytelling. And for this reason, many of CNF's initiatives begin by gathering information from our community.
CNF's Child Health Improvement through Computer Automation system (CHICA) project in Sudden Unexpected Death in Epilepsy (SUDEP) was born out of the fact that parents wanted to hear about the risk of SUDEP from their health care provider. When we asked child neurologists, less than 10% reported engaging in this conversation. It's because we listened to our community that we were driven to move forward on this issue. This is how CNF approaches everything that we do. Listen first, plan, then act.
Other community needs CNF has heard and then built multi-faceted, multi-stakeholder, and multi-year initiatives around include: transitions of care, disruptive and harmful behavior management, and access to therapies.
WE ARE RESOURCE CREATORS
CNF takes on the complicated, messy issues that affect the entire child neurology community. Our Transition of Care program provides resources to support families as their child transitions from pediatric healthcare system to the adult system. But we didn't create these resources for a specific disease state; we created them so that they were general enough to be applied to all complex conditions. Likewise, our Respite Care Notebook provides a general but detailed walk through all of the information that a caregiver would need to collect to feel confident leaving their child in someone else's care.
WE ARE SUPPORTERS
CNF knows that navigating the diagnosis, treatment, and management of a child with a neurologic condition can be life changing for a parent or caregiver. The Family Support and Empowerment Program (FSEP) offers families a direct connection with an experienced Peer Support Specialist to help navigate the journey of parent of a child living with a neurologic condition. Each Peer Support Specialist receives comprehensive training about the needs of the child neurology community. Along with offering relational support, Peer Support Specialists seek to empower families by sharing sound information and helpful resources. This model serves as a front-line, virtual, peer support portal for many undiagnosed or newly diagnosed families. CNF hopes to help other advocacy organizations build healthy programs to, not only support families in their disease communities, but also construct a connected network of accessible, informed peer support providers.