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 efforts 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.

** Enjoy our 2017 Year-in-Review Video which highlights these programs and also includes our 2018 priorities, developed from information provided to CNF from you — our child neurology community. **

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. 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, developed with our partners, CNF offers a wealth of information and resources for both providers (eg, practice guidelines, implementation tools, customizable forms) and youth/families (eg, videos, infographics, comic books, and tools to start the transition conversation with your provider). transitions information can be found at www.childneurologyfoundation.org/transitions.

To receive updates on this topic, click here.

Family Support and Empowerment Program (FSEP)

In 2017,  families from 43 states and 39 countries contacted FSEP for help, information, resources, and sometimes… just for someone to listen.

FSEP offers a connection with trained and mentored Peer Support Specialists, who are parents of children and adolescents with neurologic conditions. They offer unique emotional support, as only someone who has walked a similar journey can provide. They empower families by sharing information and trusted resources. Learn More

Connect with a Peer Support Specialist today! To receive updates on this topic, click here.

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

The Infantile Spasms Action Network (ISAN)– a collaborative network, convened by CNF , comprises 24 national and international entities focused on raising awareness for IS.

Although IS awareness is a constant focus, Infantile Spasms Awareness Week (ISAW) is held annually on December 1-7. During ISAW 2017, ISAN proudly presented the STOP Infantile Spasms mnemonic as the centerpiece for a variety of events and awareness initiatives. Learn more. To receive updates on this topic, click here.

SUDEP: 2017 Annual Educational Initiative

Each year, CNF selects a topic to be its primary education focus. For 2017, CNF 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 were developed 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. This workgroup recently defined the number of rare diseases that have a neurologic component; and of those, which disease begin in childhood. Now, the group will look at strategies for education. The ultimate goal 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

In late 2017, CNF released a Respite Care Notebook–a communication tool for caregivers to use with respite care providers.  Over 1,000 hard copies have been distributed. The Notebook includes 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 a 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. This Directory will be enhanced in 2018. Learn more

Grants and Scholarships

Research grants and summer scholarships focused on child neurology are awarded annually. 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 specific to SUDEP, transitions, and medical cannabis.

Commitment to Communication

Connecting with our child neurology community is a top priority for CNF. We have enhanced our visibility on our social media platforms  and developed the CNF Partners e-mail list. Our network enjoys a collective reach of over 53,000.

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 (see What’s Hot). If you have information you’d like to share via the CNF communication network, please email us.

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.