As we near the end of the Epilepsy Foundation Eastern PA’s 50th anniversary year, we reflect and celebrate the progress that has been made since our founding in 1972. But it is stories of our community members that remind us there is more to accomplish together. 

As we set our sights on the next 50 years, our objective is clear—prioritize erasing the discrimination, misconceptions, and stigma still surrounding epilepsy. We know these deep rooted issues stem from a lack of education and fear of the unknown. When someone witnesses a seizure for the first time, and they do not know what to do or how to help, it can be scary. Not only do we risk endangerment of the person having a seizure, but it can also lead to avoidance, social exclusion, and bullying. 

With the passing of the DOMinate Epilepsy Law, there is motivation now more than ever to reach and train all Pennsylvania school districts. The legislation encourages school nurses to complete Department of Health approved Seizure Recognition & First Aid training programs, such as the EFEPA’s. This is our opportunity to educate school nurses, teachers, personnel, and more on how to recognize and respond to seizures. 

Training all school districts is just the beginning of our vision for the future. When we equip first responders, law enforcement, businesses, and the community with the knowledge they need to be prepared to recognize and appropriately respond to seizures, we empower them to act. Now we are asking you to take action. 

The EFEPA needs your financial support in order to make this vision a reality. 

I invite you to read the Wright Family’s story to understand how increased awareness can not only reduce fear and inspire compassion but also give a child living with epilepsy the confidence to advocate for themselves and others. While parents, Tom and Jackie, are both healthcare professionals well versed in the medical aspects of epilepsy, they recognized there was still work to be done in furthering their education and understanding, as well as the community’s. The EFEPA is committed to continuing and expanding upon our community education and training programs with the help of your support. 

Meet Tom Wright, the dad of Epilepsy Warrior, Addison.

It started off as a normal morning for us, the routine chaos of getting all three of our kids ready for school, when Addison suddenly collapsed. My wife, Jackie, admitted her first instinct was to panic, even as an emergency room nurse. As an EMT, I was also uncertain how to respond.

When it is your child, or someone you care about, how can you be prepared?

At five years old, Addison’s trials were just beginning. She suffered a second seizure while at the ER and, over her three-week stay at the hospital, would be induced into a coma for two and a half weeks to manage the seizure activity. We worried for our daughter’s health and questioned how it would impact her future. At the time, we were lost and overwhelmed, but a flyer hanging up at the Epilepsy Center gave us a place to turn to for guidance and support; the EFEPA. While we understood epilepsy as a disorder, we quickly realized it is so much more than seizures; it affects every part of a person’s life.

Addison was having frequent seizures while at school and her epilepsy was affecting her learning and socialization. We sought out the EFEPA to develop a plan for her school to educate them on her needs. The EFEPA not only coached us through the accommodation meeting but came to her classroom to train her teachers and peers. They helped them properly recognize and respond to Addison’s seizures and emphasized the unique challenges she faced.

These services were vital for Addison – and us – to feel comfortable, safe, and supported in the classroom. Her experiences improved because of the trainings we requested at every new school. When she entered high school, she stood up in front of her entire school and shared her story. Afterwards, a classmate confided that they also lived with epilepsy but felt embarrassed talking about it; Addison’s bravery inspired them to speak up.

“There’s no shame in saying that you have epilepsy,” Addison proudly declared.

The EFEPA encouraged Addison to talk about her diagnosis and equipped her family with the resources hey needed to support her journey – in all its challenges and triumphs. Jackie and Tom could have never imagined responding to their little girl’s first seizure and were unprepared for the path ahead. The EFEPA was there to help begin answering Tom’s question, ‘How can you be prepared’?

Raise awareness and talk about epilepsy with friends and family. Request that your school, college, workplace, or community is trained in Seizure Recognition & First Aid. Help the EFEPA achieve our goal of making every school district in Pennsylvania seizure-safe.

If the cherished Epilepsy Warrior in your life experiences a seizure, let’s act together to ensure you, and your community, are prepared.

It is thanks to generous donors like you that the EFEPA can take one more step towards increasing public awareness and understanding. Will you join us in giving what you can this holiday season as we honor Addison’s 10 year anniversary of living with epilepsy?