Did you know that 1 in 26 people will be affected by epilepsy? With over 3 million people living with epilepsy in the U.S., this condition touches countless lives. Our family has been fortunate to receive exceptional care at NYU, and our daughter is thriving with her current treatments. However, many families lack access to the resources and support they need. That’s why I’m advocating not just for my daughter, but for all children affected by epilepsy.
If you love someone living with epilepsy, your voice can make a difference. Join me in championing increased funding and research to combat this condition.
Why I’m in DC
I’m currently in Washington, D.C., lobbying for three critical initiatives:
- Encouraging lawmakers to join the Epilepsy Caucus (shoutout to Rep. Becca Balint for stepping up!).
- Gaining support for the National Plan for Epilepsy.
- Passing the Seizure Awareness & Preparedness Act.
What is the Epilepsy Caucus?
The bipartisan Senate and House Congressional Epilepsy Caucuses introduced H.R. 10210 and S. 5353 to establish a National Plan for Epilepsy. Launched in 2023 for the House and 2024 for the Senate, this effort aims to unite Members of Congress to raise awareness and implement meaningful policies. This initiative amplifies the voice of the epilepsy community on Capitol Hill. Learn more about who has joined and how you can lobby your representatives here.
The National Plan for Epilepsy
This proposed federal initiative seeks to enhance research, care, and services for individuals with epilepsy while ensuring a coordinated federal response. Led by U.S. Senators Eric Schmitt (R-MO) and Amy Klobuchar (D-MN), this rare bipartisan effort deserves our full support. You can help by sending a personalized, pre-drafted letter to your representatives here.
Seizure Awareness & Preparedness Act
Modeled after New Jersey’s “Paul’s Law,” this act would fund training programs to ensure that all students nationwide are surrounded by individuals prepared to respond to seizures.
In 2020, New Jersey Governor Phil Murphy signed “Paul’s Law,” named after Paul St. Pierre, a teenager with epilepsy. This law allows for individualized health care plans for students with seizure disorders and mandates that school personnel receive proper training.
In 2025, Representatives Donald Norcross (NJ-01), Jim Costa (CA-21), and Brian Fitzpatrick (PA-01) introduced the Seizure Awareness and Preparedness Act to create a grant program supporting students with epilepsy. Senator Cory Booker (D-NJ) introduced a companion bill in the Senate.
With 470,000 children living with epilepsy in the U.S., that’s about six students in a school of 1,000. Since children spend much of their day in school, it’s crucial that staff recognize seizures and know how to provide first aid. You can check out the bill here.
Your Role in the Movement
We can’t do this alone. Whether by contacting your representatives, spreading awareness, or supporting affected families, every action counts. Let’s work together to ensure that no family faces epilepsy without the support and resources they need.
Let’s turn advocacy into action!
If you are a new advocate just working through a diagnosis, start here with my post on our journey. And the Epilepsy Foundation has excellent resources.
