Jordan's Guardian Angels is proud to announce we have joined The Epilepsy Foundation, The Rare Epilepsy Network, and a coalition of other organizations in support of Seizure Safe Schools legislation.
Seizure Safe Schools legislation aims to greatly improve the care and safety of students with epilepsy and seizure in schools. Currently, the Rare Epilepsy community is advocating for the passage of Sarah’s Law for Seizure Safe Schools (HB 606 in the Ohio State Legislature).
Sarah’s Law would require:
- Training for all school personnel in seizure recognition and first aid response as part of their professional development.
- Sarah’s Law would also require schools to have a Seizure Action Plan for each student with epilepsy on file and available to all school employees, contractors, and volunteers who regularly interact, directly supervise, and/or transport the student.
- It would also ensure that in the absence of a full-time nurse that at least one person at the school is trained to administer FDA-approved seizure rescue medications; and it would include a Good Samaritan Clause for those acting in good faith in accordance with the bill's provisions.
The first Seizure Safe Schools bill—the Lyndsey Crunk Act—was initiated and passed in Kentucky through the tenacious advocacy of Epilepsy Foundation Teens Speak Up! representative Lyndsey Crunk.
The Epilepsy Foundation developed a model bill based on the Kentucky law.
The model bill has five key components, with enacted laws varying by state: Requiring school personnel to complete a seizure recognition and first-aid response training; Mandating that the Seizure Action Plan is made part of the student’s file and made available for school personnel and volunteers responsible for the student; Ensuring that any medication approved by the Food & Drug Administration and prescribed by the treating physician is administered to the student living with epilepsy; Educating and training students about epilepsy and first-aid response and a Good Samaritan clause.
The Epilepsy Foundation then initiated a nationwide effort to pass the legislation in every state in the country and Washington, D.C. Passionate grassroots advocates and other national and local epilepsy organizations swiftly joined and made the initiative even stronger—enacting Seizure Safe Schools bills in 12 states so far: Kentucky, Indiana, Texas, Illinois, New Jersey, Virginia, Washington, Oklahoma, Colorado, Alabama, Nebraska, and Minnesota. Additional states have laid and passed important groundwork towards this initiative.
Epilepsy is a medical condition characterized by seizures, which are sudden surges of electrical activity in the brain, that affects a variety of mental and physical functions. It is a spectrum disease comprised of many diagnoses including an ever-growing number of rare epilepsies. Many of those diagnosed with Jordan’s Syndrome also endure seizures and Epilepsy.
Approximately 1 and 26 Americans will develop epilepsy, and about 1 and 10 people may experience a seizure during their lifetime. There are approximately 470,000 children and teens living with epilepsy in the U.S.