Epilepsy Foundation's Community Day is Virtual This Year - Dravet Syndrome News

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The Epilepsy Foundation’s Community Day, being held virtually this year, will offer patients, caregivers, and advocates the latest information about epilepsy and an opportunity to connect with others.

“Innovation and Action to End Epilepsy,” a free national conference on Aug. 29, will focus on advocacy and a variety of topics related to epilepsy and associated disorders, including Dravet and Lennox-Gastaut (LGS) syndromes.

“Innovation crosses all aspects of our lives and how we drive improvement in quality of life and research for people with epilepsy,” the foundation states on its website. “Action is how we embrace, enact, and embody that innovation to end epilepsy. Both are key to overcoming the challenges of epilepsy and finding the best care and, ultimately, cures.”

Organized by people affected by epilepsy, the event will cover topics that include the future of epilepsy treatment, genes and epilepsy, telemedicine, sudden unexpected death in epilepsy (SUDEP), cannabidiol, and getting involved in community efforts.

The event will be held from 11 a.m. to 4 p.m. EDT. The full Community Day agenda is available here. You may register here, or email [email protected] for more information.

Presenters will include the heads of foundations along with neurologists and other healthcare professionals who specialize in epilepsy, a central nervous system disorder that occurs when brain activity becomes abnormal, causing seizures or periods of unusual behavior, sensations, and sometimes loss of awareness.

Dravet is a rare and severe type of epilepsy that first appears in infancy and is characterized by types of frequent and treatment-resistant seizures that can be triggered by warm weather, fever, or sunlight. The risk of SUDEP — sudden, unexpected death of someone with epilepsy who was otherwise healthy — in Dravet is 15 times higher than those with other types of childhood-onset epilepsy.

In Lennox-Gastaut syndrome, a severe form of childhood epilepsy with multiple types of seizures, intellectual development almost always is impaired. About 2% to 5% of children with epilepsy have LGS, which usually persists to adulthood.

The Epilepsy Foundation works to help patients overcome day-to-day challenges, and to accelerate the development of therapies and cures.

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Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”

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Ana holds a PhD in Immunology from the University of Lisbon and worked as a postdoctoral researcher at Instituto de Medicina Molecular (iMM) in Lisbon, Portugal. She graduated with a BSc in Genetics from the University of Newcastle and received a Masters in Biomolecular Archaeology from the University of Manchester, England. After leaving the lab to pursue a career in Science Communication, she served as the Director of Science Communication at iMM.

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Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”

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