Advocacy
Advocacy can take various forms, such as engaging on social media, arranging meetings with legislators, writing emails, sending letters and much more.
The resources and tools available on this webpage will assist you in creating an advocacy action plan that allows you to effectively advocate for EFNENY and the epilepsy community.
Help Make our Schools Seizure Safe!
Bill S.7445 aims to ensure policies to protect students with epilepsy. Let’s unite for positive change and ensure every school is prepared to support students’ health and safety.
Your voice matters—be a part of this important movement!
What does Bill S.7445 Entail?
- Requiring Seizure Action Plans
- Seizure action plans will be required to be kept on file at the school nurse’s office for each child with a known seizure disorder & distributed to relevant school personnel and staff.
- Increased trainings for staff
- Approved seizure awareness training will be required for relevant school staff members every other year.
- Increased trainings for students
- Approved seizure awareness trainings will be required to be offered to school students K-12
- Trainings for emergency events
- At least one individual will be trained in seizure rescue medication administration by the school nurse to ensure at least two individuals will be trained and available in the event of an emergency.
Take Action
Tell your story! Adding a personal story to these meetings can leave a lasting impact on lawmakers, reach out to the Health Educator and Advocacy Coordinator if you would like to participate in future advocacy opportunities.
Become an Advocate! If you’re interested in further initiating change and influence policy in support of the epilepsy community, reach out to our team. Utilize the resources available on this page to develop a comprehensive advocacy action plan for the entire year.
2024 Priorities:
Seizure Safe Schools: SB 7073
- Requires schools to have proper Seizure Action Plans for each student with seizures
- Requires schools that have students with seizures to have proper seizure recognition and response training
- Requires schools to provide students with instruction on seizure disorders
- Allows school nurses to delegate administration of seizure rescue medications to non-licensed personnel
Advocacy Toolkit
Teens Speak Up
Teens Speak Up! (TSU) is a signature advocacy initiative from the National Epilepsy Foundation of America.
Structured as a conference, this program brings together more than 175 advocates, including, EFNENY and other affiliate office staff, families, healthcare providers, and volunteers from across the country to make a difference.
Teens living with epilepsy and a family member have the opportunity to visit the nation’s capital to receive advocacy training and meet with their lawmakers to share their experiences and discuss issues that are vital to the epilepsy community.
This is a great opportunity for young advocates to help represent the 470,000 children living with the epilepsies, meet with other teens living with epilepsy across the nation, and visit Capitol Hill in Washington D.C.
*TSU happens every other calendar year, on odd years.*
Year of Service
Each teen is asked to turn their training into action in their respective home districts through a Year of Service.
Completed in the same calendar year as the conference, the Year of Service empowers teens to take on a leadership role and advance their advocacy to the next level.
Teens will explore ways to raise public awareness, strengthen relationships with elected officials, and help create positive change for the epilepsy community.
How to apply
Interested? Eligible teens must be between the ages of 13-18 and living with epilepsy. Teens must be nominated by their local Epilepsy Foundation office. Contact the Health Educator and Advocacy Coordinator to learn more about this program.
