Sudden Unexpected Death in Epilepsy (SUDEP) is a fatal complication of epilepsy, and a significant worry for the Dravet syndrome community. The precise cause of death in SUDEP is not yet understood. And while research is being done to look at all possible causes or potential genetic links, more research is still needed. You can learn more about SUDEP and how to lower your risk on the Danny Did Foundation website.
In 2012, the first ever Partners Against Mortality in Epilepsy (PAME) meeting was held with the goal of creating a multi-stakeholder collaboration to increase understanding of epilepsy-related mortality, and to champion its prevention. Mark your calendars for the 5th upcoming PAME session – Even a Pandemic Can’t Stop the Quest – during the AES2020 virtual event.
This two-hour virtual PAME session will take place on Monday, December 7th, 2020, from 2:30-4:30pm ET and will feature a bereavement story, updates on new research and advocacy recommendations, and a review of Vital Topics in Epilepsy Mortality including:
- Insights into all-cause mortality
- Epilepsy-related mortality risk: Another example of health disparity due to socioeconomic status
- Why is SUDEP more common at night? Role of sleep
- Is seizure-induced apnea a SUDEP biomarker?
The session will be live streamed allowing families and advocates not attending AES2020 to view the PAME session. Submit your name and email address to receive viewing instructions later this fall. To register for AES2020, visit the registration page on the event website. DSF is a proud supporter of this year’s PAME session.
Also, stay tuned for more details on a robust PAME webinar series that will be rolled out over the course of next year. The webinars will continue PAME’s top-notch education delving into recent advances in mortality research and advocacy.
More information will be posted on the PAME website. Direct questions to [email protected].