Each year, CNF selects a topic to be the focus of its child neurology community educational initiative. For 2017, CNF selected Sudden Unexplained Death in Epilepsy (SUDEP) in children. SUDEP is when a seemingly healthy person with epilepsy dies unexpectedly and no clear reason for the death can be determined. The risk of SUDEP for children is lower; however, children with with epilepsy – and particularly those whose seizures are uncontrolled – do remain at risk.

As CNF’s mission to serve as a collaborative center of education and support of children and families living with neurologic conditions, CNF believes we are well situated to explore the existing gap between healthcare provider’s reluctance to discuss SUDEP risk with families and the families’ desire to be more aware of SUDEP risk so they can take steps to reduce this risk. If you are an organization that advocates on behalf of pediatric patients and caregivers living with epilepsy, or a young adult living with epilepsy, or a caregiver of a young adult with epilepsy, we invite you to join CNF in this SUDEP effort via two impactful ways:

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Next month, CNF will be distributing surveys to child neurologists and young adults/caregivers to better understand current practices and attitudes towards discussing the risk of SUDEP, as well as preferences for improvement.

If you would like to extend this survey to your organization or participate in this survey, contact [email protected].

Results from both surveys will be presented during a symposium at the 2017 Child Neurology Society conference. The results will help to guide subsequent education efforts (eg, webinars, educational materials).

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Sponsorships are available for each of the initiative’s activities. CNF welcomes and encourages advocacy partners to be involved with an initiative and an area of concern that impacts the families in our epilepsy community.

Interested in more details about sponsorship opportunities? Contact Amy Brin at amiller@childneurologyfoundation.org

www.childneurologyfoundation.org/programs/sudep
www.dannydid.org