Events & News


Seizure star: Paul (Paul’s Law)

Paul is a 13-year-old New Jersey boy who has been living with epilepsy over the past year.  We are recognizing him as our Epilepsy Star because he worked tirelessly alongside his mom, Colleen, to pass S4141, also known as "Paul's Law" and by doing this, children with epilepsy in the state of New Jersey are now safer.  His mom, Colleen, was kind enough to answer some of our questions.

Tell us about Paul's journey with epilepsy. How did epilepsy first touch his life?  

Paul was diagnosed with epilepsy on February 2019. The way it all started was that his symptoms initiated in school prior to happening at home, but they were not recognized. This is partly probably because, in the beginning, he was having absence seizures. As a result, it was a real challenge to get the right diagnosis. A variety of medical practitioners initially thought his symptoms were stress-related or tics due to an ADHD medicine he was taking. Then the nature of the seizures changed and one of these was finally witnessed by a doctor. That led to Paul receiving the right diagnosis.  

The next challenge we faced after reaching the right diagnosis was managing to find the correct dosage of medicine.

What is Paul's Law and how and why did it come to be?

According to an article (Governor Murphy signs "Paul's Law" to aid students with seizure disorders, 1/09/2020) on the official website of the State of NJ, this law "authorizes a parent or guardian of a student with epilepsy or a seizure disorder to request use of an individualized health care plan. This individualized health care plan will be developed for each student by the school nurse, in consultation with the parent or guardian of a student with a seizure disorder and other appropriate medical professionals. The plan will be consistent with the recommendations of the student's health care providers and will outline a set of procedural guidelines that provide specific directions about what to do in an emergency. Additionally, boards of education will be required to ensure that all building staff are trained in the care of students with epilepsy and seizure disorders" (

As Colleen puts it, "Paul's law creates 'seizure safe schools.' It mandates training for all school personnel and a seizure action plan for every student with epilepsy. We are the 5th state in the country to pass this type of legislation."

Paul's law came to be because of his epilepsy diagnosis. When he was first diagnosed, we were surprised and concerned that school personnel did not have training in how to manage epilepsy and were not mandated to have this.  We realized this was a major issue that needed to be fixed ASAP for all children going to school with epilepsy. There are 12,000 children with epilepsy in the State of New Jersey (and they needed protection).  I happened to be in touch through Facebook with a woman named Shari Dudo who was working on a similar law in Texas, so Paul and I decided to meet with Senator James Beach to start working on Paul's Law in New Jersey.

What did it take to get Paul's Law passed? Did anyone help you on your way?

To get Paul's law passed Paul (and his mom, Colleen), created a Facebook page called Paul's Purple Warriors NJ to raise awareness and support for the bill. We also did newspaper articles, TV appearances., and used all kinds of social media

As for help.... Colleen's best friend, Colleen Lindh, who is also Paul's godmother was there helping the family in any way she could. We also received support from old friends, our town of Maple Shade in New Jersey, and from new friends from all over the state who read or saw our story and wanted to help.

How has your life changed since Paul's Law was passed?

I would not say our life has changed since the law passed. I would however say that our life has changed since Paul's diagnosis and the journey of the legislative process.

I have cried many tears due to epilepsy, but I have found the legislation to be a powerful way to fight back against the disorder. We have made many wonderful friends across the state of NJ. while advocating for Paul's Law.

What does the future hold for the two of you?

As far as the future goes, Paul will attend teen Speak Up for The Epilepsy Foundation of America as a NJ representative. He was just asked to be in a NJ. Magazine article. After this he wants to take a well-deserved break from advocacy. We just threw a fundraising benefit to raise funds to send children to camp sponsored by The Epilepsy Alliance of NJ. and The Epilepsy Foundation in Eastern Pennsylvania.

For Paul's birthday, he chose to fundraise through Facebook and managed to raise enough money to send two kids to camp! Afterwards, at our fundraising event, we managed to raise enough money to send another eight children!  So, I would say we really reached our goal for this year.

And when Paul takes a break, I keep working on a few other advocacy projects, such as assisting people across the country to pass "Seizure Safe" school laws in their states. I created a Facebook page National Advocates for Seizure Safe Schools. Both Shari Dudo, from Texas, who was successful in passing "Sam's Law" there and Victoria Noelle from Pennsylvania (who is working on the legislation there) help me run the page.

The bill in Pennsylvania is Haley's Law Through this Facebook page we have created a community and now have kids in numerous states who are working on their own state "Seizure Safe Schools" law. In fact, some of them already have bills in their states.

I also have some specific ideas of work that needs to be done for epilepsy in New Jersey that I am in the process of investigating.

What would you like for people with epilepsy in the future?

I feel on the most basic level we need to continue to raise awareness and decrease the stigma of epilepsy. I feel people living with Epilepsy want to live as normal a life as possible. We definitely need more funding for research moving forward, especially in the area of SUDEP. The thought of it is terrifying to anyone who has a loved one with epilepsy.

Thank you for agreeing to speak with us about Paul and Paul's Law and congratulations to the two of you for all you have done and continue to do for epilepsy and those living with it. 

* Photo: Paul, Governor Murphy and Colleen.

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