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2017 CNF Educational Initiative: SUDEP

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Outcomes & Resources |  2017 CNF Educational Initiative: SUDEP

 

 

CNF’s Board of Directors selected Sudden Unexpected Death in Epilepsy (SUDEP) as the topic for its 2017 symposium during the Child Neurology Society (CNS) annual meeting.

Due to CNF’s service as a collaborative center for the child neurology community, it is ideally situated to explore the existing chasm between health care provider’s reluctance to discuss the risk of SUDEP and the families’ desire to be more aware. In this pursuit, CNF asked Danny Did Foundation to serve as its lead advocacy partner.

We sincerely thank the Danny Did Foundation for its true partnership on this topic. They are tireless advocates for families and we are honored to stand beside them.

SOLD OUT Symposium

The 2017 CNF SUDEP Symposium, October 7th in Kansas City, was a SOLD OUT event that brought together providers, families, and advocates.

 

Prior to the symposium, over 1,200 caregivers completed a survey about communication between medical professionals and families about epilepsy. A survey will also be distributed to CNS members at the end of this month to determine SUDEP knowledge and the causes of provider hesitancy to disclose the risk of SUDEP. Initial findings from the first survey were shared at the event, and the findings from both surveys will inform future programs and activities.

2 new SUDEP resources: “Considering a Seizure Alert Device?” and “The SPIKES Strategy” were unveiled at the symposium and are now available on www.childneurologyfoundation.org/SUDEP or by clicking on the graphics below:

Watch the CNF Partners Email List for information about an upcoming SUDEP webinar on Friday, November 17. Time TBD. If you are not already part of the Partners list, click here.

 

In addition to the Danny Did Foundation, the SUDEP Symposium and Education Initiative would not be possible without our sponsors and partners: Lundbeck, Greenwich Biosciences, Sunovion, Lapham Family, Tuberous Sclerosis Alliance, CURE, Dup15q Alliance, Epilepsy Foundation, Dravet Foundation, FACES, PCDH19 Alliance, Seizure Tracker, Phelan-McDermis Syndrome Foundation, Hope for Harper, and Hope for Hypothalamic Hamartomas. THANK YOU.