[Social9_Share]

The inaugural Seizure Action Plan (SAP) Awareness Week will be held February 8 to 15, organized by the Seizure Action Plan Coalition, which is a collaboration of the Dravet Syndrome Foundation, the Lennox-Gastaut Syndrome (LGS) Foundation and the Tuberous Sclerosis Alliance. The campaign is underwritten by presenting sponsor Neurelis, Inc. with generous supporting funding from UCB, Inc.

“SAP Week will highlight the need for people with epilepsy to have a conversation with their healthcare providers, especially if they are in a key subgroup who would benefit from a seizure action plan like those who have intractable epilepsy syndromes, who are at high risk for seizure clusters, status epilepticus or have frequent nocturnal generalized tonic-clonic seizures,” said Dr. Tracy Dixon-Salazar, LGS Foundation Executive Director. 

SAP Awareness Week features a social media campaign and new website designed to highlight the need for people with epilepsy, their caregivers and healthcare providers to develop detailed plans, especially should an emergency occur. The social media campaign incorporates the hashtag #SAPAW2021 and urges people to learn more at SeizureActionPlans.org.

“According to the Centers for Disease Control and Prevention, approximately 3.5 million Americans have epilepsy, which is roughly 3 million adults and 470,000 children and teens,” explained Mary Anne Meskis, Executive Director, Dravet Syndrome Foundation. “About one-third of people with epilepsy will eventually develop refractory epilepsy or drug-resistant epilepsy, making a seizure action plan an important management tool, so this new awareness week is critical for educating the epilepsy community about this important issue.”

“A seizure rescue plan is a critical component in the overall management of seizure emergencies,” said Craig Chambliss, President and Chief Executive Officer of Neurelis, Inc. “We are excited to see the launch of this website as an important new resource that will benefit people living with epilepsy and those who care for them.  In addition, the launch of Seizure Action Plan Awareness Week helps spotlight the important need for everyone with epilepsy to have a thoughtful and comprehensive seizure action plan.  It is our privilege to partner in this effort and many other initiatives in the epilepsy community.”

In a recent study, only 30% of adult patients responded that they have a seizure action plan, and only 45% of pediatric patients had a seizure action plan. “A seizure action plan can offer more control to patients and caregivers by providing consistent, patient-specific guidance regarding seizure management.  A seizure action plan can also provide clarification on patient and caregiver concerns, such as understanding what to do during a seizure, when watchful waiting is appropriate, when to call 911 or go to the hospital, and much more,” shared Kari Luther Rosbeck, President and CEO, Tuberous Sclerosis Alliance. 

“We’ve heard from people living with epilepsy, their caregivers, and physicians that a seizure action plan can make the difference in the day-to-day, lived experience of a person living with a seizure disorder,” said Mike Davis, Head of U.S. Neurology, UCB. “We are proud to support this important education to ensure that people living with epilepsy have the tools and medications they need, and we are committed to developing rescue treatments to stop seizure clusters when and where they occur as well as to rapidly terminate active epileptic seizures.”

All adults and children with epilepsy need a seizure action plan – especially those with new-onset epilepsy and those with ongoing frequent convulsive seizures who had more than one seizure in the previous year.  Seizure-free patients who have risk factors for breakthrough seizures may also benefit from a seizure action plan. In addition, those who need help to identify their individual seizure pattern, do not have a plan, or live far from medical facilities are key subgroups who would benefit from a seizure action plan.

For more information on Seizure Action Plan Awareness Week, visit SeizureActionPlans.org today.

ABOUT THE DRAVET SYNDROME FOUNDATION
The mission of Dravet Syndrome Foundation is to aggressively raise funds for Dravet syndrome and related epilepsies; support and fund research; increase awareness; and provide support to affected individuals and families. For more information, visit dravetfoundation.org.

ABOUT THE LENNOX-GASTAUT SYNDROME FOUNDATION
The Lennox-Gastaut Syndrome (LGS) Foundation is a non-profit organization dedicated to improving the lives of those impacted by LGS through research, family support programs, and education. For more information, visit lgsfoundation.org.

ABOUT THE TUBEROUS SCLEROSIS ALLIANCE
The Tuberous Sclerosis Alliance is dedicated to finding a cure for tuberous sclerosis complex, while improving the lives of those affected. For more information, visit tsalliance.org.

RECENT NEWS