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Advancing Awareness of Epilepsy & Sudden Unexpected Death in Epilepsy (SUDEP)

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Free SUDEP Webinar for Parents, Patients and Doctors

Danny_Did_Logo_No_Margins
Friday, November 17, 2017
11:00 AM - 12:15 PM
Virtual



Danny Did is the lead advocate partner to a yearlong SUDEP educational initiative with the Child Neurology Foundation. All are invited to join this free webinar to further the conversation around SUDEP.

DETAILS: One in 26 Americans will develop epilepsy, and it can happen at any age. However, new cases of epilepsy are most common in children, especially in the first year of life. Parents of children living with epilepsy should be informed of all the risks of their child’s neurologic condition – including Sudden Unexpected Death in Epilepsy (SUDEP). 

SUDEP is the leading epilepsy-related cause of death. Despite the serious risk of SUDEP, doctors are often hesitant to discuss it. But studies show that families: 1) Want their doctors to tell them about the risk of SUDEP; and 2) Believe that learning about SUDEP could make a difference in how they approach seizure control.

Join experts from the child neurology community for a 75-minute webinar with live polling. Called Let’s Talk About Sudden Unexpected Death in Epilepsy (SUDEP): A Conversation with Parents and Doctors - this webinar will provide participants with:

- An introduction to SUDEP, including the known causes, risk for children, how to reduce risk

- Current SUDEP research initiatives

- Strategies families can use to talk with medical providers about health risks

- The parent perspective of how to best use information about the risk for SUDEP when managing a child’s medical care

- Resources for families as they address the risk for SUDEP 

Margaret Storey and Tom Stanton from Danny Did will be on the panel. Other speakers will include Jeff Buchhalter, MD and Sarah Friebert, MD. 

WEBINAR REGISTRATION: This webinar is free but requires registration HERE

Even if you can’t attend the live event, we still encourage you to REGISTER. That way, you will receive the archived event, direct access to the resources that will be discussed, and additional SUDEP information.


Additional SUDEP Education Efforts

Previous to this webinar, the Child Neurology Foundation (CNF) hosted a half-day symposium during the Child Neurology Society (CNS) meeting. The symposium brought together parents, patients, advocates, and physicians to provide a unique education experience. This symposium has become popular since its inception, selling out the past two years.

CNF asserts the critical value of child neurology professionals, advocates and parents working as partners in the delivery of quality care to every child. To that end, all CNF’s educational modalities are interdisciplinary and bring stakeholder groups together to educate one another.

We believe this is a vital contribution to the child neurology community, as it addresses the chasm often existing between these groups regarding key issues, such as treatment options, services, and goals of care.

To learn more about this effort, click here

 
 

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