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Issue Background

Epilepsy Foundation Rolls Out Seizure Safe Schools Initiative Nationwide

FOR IMMEDIATE RELEASE

MEDIA CONTACT
Jackie Aker
310.846.9272
jaker@efa.org 
 

LANDOVER, Md, September 16, 2019 — Epilepsy Foundation today announced it is rolling out its Seizure Safe Schools initiative nationwide. It calls for state legislation to ensure all school personnel, including nurses, teachers, and volunteers, are not only prepared but can recognize and respond appropriately and efficiently to students experiencing seizures. To date, four states — Kentucky, Indiana, Texas and Illinois — have successfully passed Seizure Safe School legislation.

“For students living with epilepsy, it is important that schools are well-equipped with the tools necessary to provide a safe and enriching environment,” said Laura Weidner, vice president, Government Relations & Advocacy, Epilepsy Foundation. “Seizure Safe Schools will raise awareness and implement a uniform standard of care and response across the country so that students have access to the care they need and reach their full academic potential.”

There are approximately 3.4 million people living with epilepsy in the United States and 470,000 are children. Despite its prevalence, epilepsy is still highly misunderstood by the public. The Foundation’s goal is to build an empathetic next generation who welcome people living with epilepsy as their friends, neighbors, and future colleagues and who are prepared to help them by knowing proper seizure first aid.

The nationwide Seizure Safe Schools initiative will help educate school personnel and bridge care gaps by calling on states to pass legislation that would require all public schools to:

  • Train school personnel on seizure detection and first aid response;
  • Mandate Seizure Action Plans be on file for every student diagnosed with epilepsy or a seizure disorder, and require those plans be available to all personnel responsible for the student;
  • Ensure the administration of medications approved by the U.S. Food & Drug Administration; and
  • Educate and train students about epilepsy and seizure first aid response.

In April 2018, Kentucky became the first state to pass into law the Lyndsey Crunk Act (HB 147), which helped to create the model bill for the Seizure Safe Schools initiative. In collaboration with the Epilepsy Foundation of Kentuckiana, Lyndsey Crunk — a 17-year-old Epilepsy Foundation Teens Speak Up! ambassador — advocated for two years for the passage of HB 147. This included testifying in front of the Kentucky’s House Education Committee regarding the importance of seizure first aid and training and education programs.

“An epilepsy diagnosis is not easy; it’s not just about seizures, it’s also what epilepsy leaves behind,” said Cyndi Crunk, Lyndsey’s mom. “The anxiety, depression, lack of self-esteem and bullying had taken a toll on her ability to go to school. This is what led her to find her voice and legislate for Seizure Safe Schools. It has created more awareness and brought epilepsy out of the shadows. We’re so proud of Lyndsey and her determination to educate others and inspire change in the epilepsy community.”

As a result of the Lyndsey Crunk Act, the Epilepsy Foundation began working with its network of partners to pilot the initiative in other states. This year, three additional states became leaders in this national movement by passing versions of Seizure Safe Schools legislation: Indiana, (HB 1089 – May 2019), Texas (Sam’s Law, HB 684 – June 2019) and Illinois (Seizure Smart School Act, HB1475 – July 2019). The Epilepsy Foundation is in the process of working with legislators in many states to draft and introduce bills for 2020 legislative sessions.

“Students should not have to worry about having access to needed healthcare in their school,” said Philip M. Gattone, M.Ed., president and chief executive officer, Epilepsy Foundation. “Seizure Safe Schools is a top priority for the Epilepsy Foundation—as shown by our offices in four states along with passionate advocates who are trailblazers in this successful effort. Through this nationwide initiative, we hope to make every student in America feel safe and supported.”

Epilepsy Foundation is inviting state-level elected officials and volunteers — parents, community organizations, healthcare providers, etc.— to join the Foundation’s Seizure Safe Schools efforts in their community. To participate in your region, please contact publicpolicy@efa.org and to learn more, visit advocacy.epilepsy.com/seizuresafeschools.

About Epilepsy
According to the World Health Organization, epilepsy is the most common serious brain disorder worldwide with no age, racial, social class, national or geographic boundaries. The U.S. Centers for Disease Control & Prevention (CDC) estimates that 3.4 million people in the United States are affected by epilepsy. It is the underlying tendency of the brain to produce seizures which are sudden abnormal bursts of electrical energy that disrupt brain functions. 

About the Epilepsy Foundation
With a network of nearly 50 partners throughout the United States, the Foundation connects people to treatment, support and resources; leads advocacy efforts; funds innovative research and the training of specialists; and educates the public about epilepsy and seizure first aid. For more than five decades, the Epilepsy Foundation has shone a light on epilepsy to promote awareness and understanding, and to advocate for laws that matter to people with epilepsy, while also funding $65 million for epilepsy research and supporting 3,076 epilepsy investigators and specialists in their early careers. Over the past 17 years, in partnership with the CDC, the Epilepsy Foundation has helped to improve access to care for people with epilepsy, expanded its digital reach and online resources in homes across the country, and trained more than 500,000 school and community personnel in how to recognize seizures and administer seizure first aid. The Foundation has also assisted more than 108,000 people through its 24/7 Helpline in the past five years, and continues to focus on innovation, new therapies, community services, advocacy and education as key priorities. To learn more visit epilepsy.com or call 1.800.332.1000. Follow us on Facebook and Twitter.

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