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What:
Ending sudden unexplained death in epilepsy (SUDEP) is a shared responsibility. And you can help! Any successful effort will require doctors, people with epilepsy, nurses, researchers, coroners and those bereaved by the loss of someone to SUDEP to work together. It will require collaboration across many different organizations over many years. This webinar will begin with a look at what research is telling us about the possible causes as well as future prevention methods and cures for SUDEP. The second part of this webinar will explore how you or a loved one can help by joining a study. We will also discuss the support needs of research study participants and the resources available to them. The presenters will also briefly discuss the SUDEP registry and its role in SUDEP research.

When:
Wednesday, January 15, 2014
1:00 pm Mountain

Cost:
Space is limited. A $25 donation is suggested.

Register for this webinar

What:
Research shows that SUDEP takes the life of about one person per 1,000 people living with epilepsy per year. The greatest risk factor for SUDEP seems to be in those who have frequent seizures, especially generalized tonic-clonic (grand mal) seizures. This webinar will begin with a brief overview SUDEP and its possible causes. The presenters will then discuss what health care professionals, people living with epilepsy and they families can do to help reduce SUDEP risk. This will include a review various strategies including better education, the use of seizure monitoring devices, improved seizure medication management, and supervision. Participants will leave with the most current thinking on ways to reduce SUDEP risk. Plenty of time will be left to answer your questions at the end of the webinar.

When:
Wednesday, June 12, 2013
1:00 pm - 2:00 pm Mountain

Cost:
This webinar is set up with a suggested $25 donation to support PAME activities.

Register for this event

What:
Talking about death, or the possibility of death is hard even for doctors and nurses. But talking about sudden unexpected death in epilepsy (SUDEP) is an important first step to understanding it. During this webinar the presenters will discuss when and how nurses and doctors should ideally talk about SUDEP with a patient and their family, what people with epilepsy and their families should be asking their doctors. Also included will be a review of what research studies say those living with epilepsy and their families want to hear from doctors about SUDEP. A review the ethics of SUDEP disclosure will also be included. Finally, the presenters will explore the perspective of those who are bereaved by the loss of a loved one to epilepsy and what information they believe should be disclosed.

When:
Wednesday, October 23, 2013
1:00 pm Mountain

Cost:
$25.00 suggested donation