Our Programs

The Child Neurology Foundation connects and collaborates with patients, families, physicians, health care providers, advocacy organizations, and industry partners–all of whom work together to help improve the lives of children with neurologic disorders and their families.

CNF programs, initiatives, and annual projects reflect our mission: To serve as a collaborative center of education and support for children and families living with neurologic conditions. Our focus is on the best quality of care and the highest quality of life for members of the child neurology community. Below you’ll find an overview of our current programs and offerings.

Transition of Care Program

Transitioning from the pediatric to adult health care system should be expected for all patients living with a neurologic condition. However, for some youth and young adults, transitioning from their child neurologist to an adult neurologist can prove challenging. Unfortunately, the necessary supports and services to make the transition successful are often fragmented or missing.

CNF describes the goal of its Transition of Care Program as helping to support youth, families, and child neurology teams in the medical transition from pediatric to adult health care systems. It is one of CNF’s most diverse and comprehensive programs.

To address that goal, CNF offers a wealth of information and resources for both providers (eg, practice guidelines, implementation tools) and youth/families (eg, videos, helpful links, and tools to start the transition conversation with your provider), many of which are developed with the support of our partners who also believe in the importance of transitions within the neurology population. All transitions information can be found at www.childneurologyfoundation.org/transitions.

To receive updates on this topic, click here.

Family Support and Empowerment Program (FSEP)

FSEP offers families a free connection with an experienced, compassionate Peer Support Specialist. FSEP was created so that no parent or caregiver in the child neurology community ever walks alone.

A Peer Support Specialist can help you and your child living with a neurologic condition from diagnosis, treatment, and beyond. Along with relational support, CNF Peer Support Specialists empower families by sharing information and helpful resources. Connect with a Peer Support Specialist today! Learn More

“We would be humbled and honored to walk with you on your journey.”

To receive updates on this topic, click here.

Infantile Spasms (IS) Awareness / Infantile Spasms Action Network (ISAN)

Each year, nearly 1,200 infants are diagnosed with infantile spasms (IS)–a rare, but serious form of epilepsy occurring in children, usually under one year of age. This neurological condition, if left untreated, can cause serious developmental delays in a child’s growing brain. But we are raising awareness in hopes of a brighter future.

Infantile Spasms Awareness Week (ISAW) is held annually from December 1 to 7. In recognition of ISAW 2017, the Infantile Spasms Action Network (ISAN)– a collaborative network of over 20 national and international entities focused on raising awareness for IS and convened by CNF–proudly presents the STOP Infantile Spasms mnemonic. www.ISweek.org

To receive updates on this topic, click here.

Sudden Unexpected Death in Epilepsy (SUDEP): CNF 2017 Annual Educational Initiative

Each year, CNF selects a topic to be its primary education focus. For 2017, CNF has selected Sudden Unexplained Death in Epilepsy (SUDEP). SUDEP is when a seemingly healthy person with epilepsy dies unexpectedly and no clear reason for the death can be determined. A variety of SUDEP educational activities  are currently in development with a critical focus on improving communication between the child neurology team and patients/families when discussing difficult information. Learn more

To receive updates on this topic, click here.

CNF/Global Genes RARE Child Neurology Workgroup

The goal of the workgroup is to better understand the needs of children living with rare genetic conditions that have a neurologic component. The workgroup, that includes corporate advisory members from CNF and our partner, Global Genes, advises both organization’s educational and advocacy efforts in this space. The initial strategic priority for this workgroup is to define the number of rare diseases that have a neurologic component; and of those, which disease begin in childhood. 

Why is this a strategic priority?

Because children and their families who live with rare diseases often tell us that they feel isolated. We hope our organizations’ abilities to assist in defining this reality will, in turn, help these children and families understand there is a much broader support community in which they belong. This community can share support, educational resources, and opportunities for networking. The ultimate goal being for this population to feel empowered to actively participate in their health care in partnership with their provider teams; including child neurologists. Learn more

To receive updates on this topic, click here.

Respite Care Notebook Project

CNF is developed a Respite Care Notebook–a communication tool for caregivers to use with respite care providers.  The Notebook will include medical and condition-specific information, but with a “person-first” feel – leading with the child’s strengths, likes and dislikes. The Notebook is now available in hard copy and as a downloadable file. Learn more

To receive updates on this topic, click here.

Disorder Directory

Navigating diagnosis and/or treatment of your child’s neurologic disorder can be challenging. CNF’s Disorder Directory serves as the premier source of information, inspiring family stories, and current resources related to over 25 child neurological conditions. Indexed alphabetically, topics include: autism, epilepsy, ketogenic diets, seizures, stroke, and more. Learn more

Grants and Scholarships

Awarding research grants and summer scholarships focused on child neurology. Learn more

Educational Webinars

Webinars that address disease-specific issues from the provider, caregiver, and advocate perspectives to provide the child neurology community with a forum for bringing partners’ perspectives together. Pediatric neurologists provide clinical considerations related to the disease-specific issue, caregivers share their experiences and advice, and organizational advocates highlight current resources available to help support both clinicians and families. View past webinars.

Commitment to Communication

Connecting with those in our child neurology community is a top priority for CNF. Since early 2017, our website has been revised, we have enhanced our visibility on our social media platforms,  launched the Family Support and Empowerment Program (FSEP), and created the CNF Partners e-mail list.

All are invited to join the CNF Partners List (sign up) to receive Pathways – a monthly eNewsletter (see past issues) featuring patient educational information, advocacy events, scholarships, and other opportunities of interest to the child neurology community and Opportunities and Announcements – a weekly single-topic email with a child neurology focus.

If you have questions or would like to collaborate on CNF programs, contact us at info@childneurologyfoundation.org.
If you are interested in supporting CNF programs, visit our donation page.