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.
Each patient transitioning from a child neurologist to an adult provider will have unique experiences and needs. CNF’s Transition of Care Program helps to support youth, families, and child neurology teams in the transition from pediatric to adult health care systems. It is one of CNF’s most diverse and comprehensive programs.
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).
Family Support and Empowerment Program (FSEP)
FSEP offers a free, direct connection with experienced Peer Support Specialists who help families living with a neurologic condition. Having connected with nearly all 50 states and over 45 countries, FSEP is expanding to help make providers aware of this program, so we can help more families. CNF also has a PCORI grant that will help us create awareness about the benefits of peer support. Connect with a Peer Support Specialist today!
Infantile Spasms (IS) Awareness / Infantile Spasms Action Network (ISAN).
ISAN is a collaborative advocacy model convened by CNF. Currently 25 national and international organizations strong, ISAN hosts Infantile Spasms Awareness Week every December and created the STOP IS mnemonic—seen by 195 million! ISAN also addresses issues in the IS community, like barriers to medication and services.
Respite Care Efforts
CNF’s Respite Care Notebook was created for families who use respite care services or are thinking about it. Use the forms in this free Notebook to tell the respite caregivers about your child and his/her needs. They can use that information to provide the best care for your child. The Notebook is now available in hard copy and as a downloadable file. Caregivers Need Care Too!
Improving Family-Provider Communication
CNF believes in building partnerships, based on open communication, between families and child neurology health care teams. One way we are tackling this… with our partners, we are working on a computer-based tool to automatically remind doctors to talk about the risk of Sudden Unexpected Death in Epilepsy (SUDEP) with parents during doctor visits. To help with this effort, we’ve created resources in both English and Spanish, about SUDEP risks, but also customizable Seizure Action Plans, too.
Rare Child Neurology Efforts
Did you know that 3,000+ genetic conditions affect the neurologic system? And 75% of those conditions affect children? The RARE Child Neurology Workgroup aims to now define this community so where families can share support, educational resources, and networking opportunities. Children and their families who live with rare conditions often feel isolated. We want to change isolation to empowerment.
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. A new, more comprehensive version of the Directory will be available this year.
Grants and Scholarships
CNF offers Grants & Scholarships every year to families and health care providers in our child neurology community
www.childneurologyfoundation.org/research-grant-opportunities | To receive updates on this topic, click here
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 100,000.
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 firstname.lastname@example.org.
If you are interested in supporting CNF programs, visit our donation page.