WASHINGTON, Feb. 8, 2022 /PRNewswire/ -- From February 14 to 21, the Second Annual Seizure Action Plan Awareness Week will highlight the importance of having a seizure action plan in place. The awareness campaign is supported by the Seizure Action Plan Coalition, which is a collaboration of the Dravet Syndrome Foundation, Lennox-Gastaut Syndrome (LGS) Foundation and TSC Alliance®. The campaign is underwritten by presenting sponsor Neurelis, Inc. with generous supporting funding from UCB, Inc.
The 2022 Seizure Action Plan Awareness Week includes a social media outreach effort and the debut of a new animated educational video, which will both emphasize the need for people with epilepsy, their caregivers and healthcare providers to develop detailed plans, especially should an emergency occur. The 2022 effort incorporates the hashtag #SAPAW2022 and urges people to learn more at SeizureActionPlans.org.
Approximately 30% of patients diagnosed with epilepsy have refractory or treatment-resistant epilepsy, which means available medications and devices are unable to bring the seizures under control. Many patients with refractory epilepsy may experience prolonged seizures (status epilepticus) and/or seizure clusters, which may need to be stopped with emergency intervention. Therefore, Seizure Action Plans (SAPs) are crucial for the overall management of seizure emergencies.
All adults and children with epilepsy need an SAP – 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 an SAP. In addition, those who need help to identify their individual seizure patterns, do not have a plan or live far from medical facilities are key subgroups who would benefit from a Seizure Action Plan.
"We are proud to support education about the importance of Seizure Action Plans so people living with epilepsy and their caregivers have the tools and medications they need," said Mike Davis, Head of U.S. Neurology, UCB. "As we continue to partner with both patients and physicians, it's critical that we focus on implementing those action plans, including the knowledge of when to use rescue medications, in order to advance epilepsy care."
"SAPS are important because seizures can be life-threatening," says Dr. Tracy Dixon-Salazar, Executive Director of the LGS Foundation. "Having an SAP lets others know what to do in an emergency situation. An SAP can also reduce the time to action during a seizure and faster response times can reduce risk of prolonged seizures, risk of mortality and the need for additional rescue medications."
"So often, seizures arrive unannounced. Approximately 70 percent of people with epilepsy do not have a Seizure Action Plan in place despite broad consensus that every person with epilepsy should have one," said Craig C. Chambliss, President and Chief Executive Officer of Neurelis, Inc. "An up-to-date Seizure Action Plan is central to the management of seizure emergencies and epilepsy overall. Seizure Action Plan Awareness Week spotlights the importance of sound planning and knowing how to manage a seizure emergency. New options for people with epilepsy include on-demand seizure rescue medications which provide fast, convenient and reliable treatment that can be used anywhere and everywhere seizures occur. We are proud to be able to continue our support of this critical initiative and encourage more dialogue on why every second counts when it comes to better control of epilepsy."
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 individuals impacted by LGS through advancing research, awareness, education and family support. For more information, visit lgsfoundation.org.
ABOUT THE TSC ALLIANCE®
The TSC Alliance is an internationally recognized nonprofit dedicated to finding a cure for tuberous sclerosis complex, while improving the lives of those affected. For more information, visit tscalliance.org.
Senior Vice President, Strategic Communications
SOURCE Seizure Action Plan Coalition