Each year, the Epilepsy Foundation of America works tirelessly to coordinate a legislative lobbying effort in Washington D.C. with advocates from all across the nation. Every other year, ‘Teens Speak Up!’, a lobbying program, which the Epilepsy Foundation of Northeastern New York was proud to be a part of this year, and in many years past. Teens Speak Up! Is a grassroots advocacy program that brings teenagers with epilepsy together to share their stories, learn the ins and outs of a successful legislative meeting, and connect with one another. To mark the end of this annual conference, teens, their families, and staff members from local or national offices embark on a journey to share their stories with elected officials from their region and advocate for programs, policies, and funding.
This year the process for choosing attendees was updated to have advocates self-nominate themselves. Potential advocates were asked to answer questions about why they want to advocate and provide character references for national staff to review. This year EFNENY was proud to bring15-year-old Dustin Russell from Ballston Spa, and his mother Kathryn down to Washington D.C. to attend this conference and advocate at the federal level.
Dustin’s epilepsy journey started in the fall of 2023, at the age of 12. His first tonic-clonic seizure happened while at school and lasted over four minutes. Dustin is your average high school student who enjoys spending his time playing sports, as well as hanging out with his teammates and friends outside of school. The student athlete lifestyle has been what the Russell family has known since Dustin was a very young age, with many late nights, travel events, while balancing a schedule of school sponsored sports, travel leagues, and general day to day life. Unfortunately, in the past 2 years, 4/7 of Dustin’s seizures have happened at school or during a sporting event. Due to his lack of warning before his seizures, his seizures have caused significant injury. Dustin will be unable to participate on the field this baseball season due to having recently undergone shoulder surgery to repair damage that was done during a seizure.
While seizures have impacted his life through injury, they have also impacted his education. Dustin’s school attendance has been greatly affected since his diagnosis. His journey with epilepsy has caused him to miss many days for doctor’s appointments, overnight EEG stays, and travel to receive specialty care out of state. The Russell’s are believers in their son’s autonomy and independence, and did not want seizures to disrupt him from doing the things he loves. Dustin’s mom, Kathryn has made it her mission to be “on-call” at all times, often working remotely from the school parking lot for any event there is not a school-nurse present for. This includes all sports practices, being on the sidelines for every single game, and even acting as a golf caddy on the golf course for Dustin’s team so that she can be on site at a moment’s notice in the event that Dustin needs his rescue medication.
In many states across the country, there is no required training for school personnel, coaches, or other entities employed within the school district setting. In most of these states, including New York, the only individual employed by the school district who is legally able to give life-saving rescue medications is the school nurse. Stories such as Dustin’s are unfortunately not rare, and have brought about a need for the first legislative priority that was the reason for Dustin being such a strong advocate which is the Seizure Awareness and Preparedness Act (S.5065) which would require school districts to have seizure action plans for students with known seizure disorders, as well as education for all students and staff on seizure recognition and first aid. Similar legislation is being worked on at the state level, to be re-introduced in the 2025 Legislative Session for NYS specifically to require seizure action plans, seizure recognition and first aid training, as well as allow for trained unlicensed personnel to administer nasal rescue medications.
Dustin also asked his legislators to join the Congressional Epilepsy Caucus to show their support of all individuals living with epilepsy in NYS. Special thanks to Representative Paul Tonko NY-20 for joining after the last Teens Speak Up! Conference in 2023 and his continued support on that caucus.
We asked for support in creating a National Plan for Epilepsy, following a similar method to the recently approved National Plans for Alzheimer’s & Parkinson as well as continued funding for the CDC Epilepsy Program, the NIH Brain Initiative, and other national research initiatives to create more treatment options for those living with epilepsy. Dustin’s story was well received in meetings with staff from Senator Charles Schumer, Senator Kirsten Gillibrand, and Representative Paul Tonko’s office. Additional information about Dustin’s story and the legislative requests were left in Representative Pat Ryan NY-18, Representative Elise Stefanik NY-21, and Representative Josh Riley’s NY-19 offices for review.
Dustin will continue his advocacy journey as he embarks on a Year of Service in partnership with EFNENY. Dustin plans on advocating at the NYS Capitol for Seizure Safe Schools legislation, as well as bringing education and awareness to his local community about epilepsy and seizures.
The Epilepsy Foundation is extremely thankful to have fierce advocates such as the Russell Family and look forward to supporting Dustin in his Year of Service and fighting for more support and awareness for people living with epilepsy in years to come.
If you or a loved one are interested in learning more about what you can do to advocate for epilepsy awareness and funding in NYS fill out this form to be contacted about upcoming opportunities: https://forms.office.com/r/9TwfjcwzrU
