Epilepsy Foundation Rolls Out New Initiatives for its More than 2,500 Kids Crew Members Impacted by Epilepsy

Monday, April 6, 2020

New World Changer Award, Online Group and Virtual Talent Show Bring Members Together

LANDOVER, Md. – Epilepsy Foundation announced today it is rolling out new initiatives for its more than 2,500 Kids Crew members so that they can learn, spread awareness, and make a difference for the 3.4 million people living with epilepsy in the United States. Kids Crew, led by 15-year-old Hailey Scheinman, is a program of the Epilepsy Foundation for all kids 14 and under who have epilepsy themselves or have a sibling, friend or parent with epilepsy. The new Kids Crew initiatives include:  

  • Kids Crew World Changer Award: A special recognition for Kids Crew members to celebrate the work they have done to learn about epilepsy, help their community and give back. Members will have eight activities to complete in a calendar year and earn themed pins. Activities such as Advocated For Change which members can complete by contacting legislators to tell them about epilepsy and how legislators can support the community and bills being considered at the local and federal level. Once a member collects all eight themed pins, they will earn the World Changer Award. 
  • Kids Crew Online Group: This online forum is a members-only, safe place for kids (with their parents) to ask questions, see what other kids are going through, message other members, and discuss what they are doing in their community. The goal of the online group is to make sure kids know they are not alone, and to help them meet other kids who are also affected by epilepsy or who want to help those who have seizures. This is a forum for members to give and receive good information and help to make life better for others.
  • Kids Crew Virtual Events: In the coming months, Kids Crew will be hosting a series of fun and engaging events for its members. On April 3 Kids Crew hosted a virtual bingo with more than 150 kids and their families. The event served as a fun way to connect kids impacted by epilepsy and provide a distraction while staying safe at home. Other events include an online talent show featuring Kids Crew families (April 10) and quarterly virtual meeting to share community updates (May). 

Kids Crew was started by Hailey’s family in their community to help kids navigate through their epilepsy journey, teach them about epilepsy and seizures, and empower them to make an impact for those impacted by epilepsy. The program started because of Hailey’s twin sister Livy who lives with multifocal, partial epilepsy caused by a brain malformation. Hailey is one of Livy's most outspoken and compelling advocates and serves as the Kids Crew president and CEO. Since its creation in 2016, Kids Crew members have educated more than 3,000 classmates about epilepsy and seizures, including 1,000 during this past International Epilepsy Day.

“Every member can do something good in their community. It doesn’t matter who you are or if you need some help, you just have to go out and do it,” said Hailey. “Although life may be a little different right now, if we all stay safe, stick together (at a safe distance), inspire one another, and have hope, we can keep on making life better and changing the world!”

Recently, Hailey was recognized by Marvel as one of 20 kids throughout the country who are featured in Marvel's Hero Project available on Disney+. The series reveals the remarkable, positive change the real-life heroes are making in their own communities. Hailey's episode debuted on the platform on March 20, 2020.

For more information about Kids Crew activities and to register your kids, visit epilepsy.com/kidscrew.

About Epilepsy

According to the World Health Organization, epilepsy is the most common serious brain disorder worldwide with no age, racial, social class, national or geographic boundaries. The U.S. Centers for Disease Control & Prevention (CDC) estimates that 3.4 million people in the United States are affected by epilepsy. It is the underlying tendency of the brain to produce seizures, which are sudden abnormal bursts of electrical energy that disrupt brain functions.

About the Epilepsy Foundation

With a network of nearly 50 partners throughout the United States, the Foundation connects people to treatment, support and resources; leads advocacy efforts; funds innovative research and the training of specialists; and educates the public about epilepsy and seizure first aid. For more than five decades, the Epilepsy Foundation has shone a light on epilepsy to promote awareness and understanding, and to advocate for laws that matter to people with epilepsy, while also funding $65 million for epilepsy research and supporting 3,076 epilepsy investigators and specialists in their early careers. Over the past 17 years, in partnership with the CDC, the Epilepsy Foundation has helped to improve access to care for people with epilepsy, expanded its digital reach and online resources in homes across the country, and trained more than 500,000 school and community personnel in how to recognize seizures and administer Seizure First Aid. The Foundation has also assisted more than 108,000 people through its 24/7 Helpline in the past five years, and continues to focus on innovation, new therapies, community services, advocacy and education as key priorities. To learn more visit epilepsy.com or call 1.800.332.1000. Follow us on Facebook and Twitter.

Contact Name: 
Jackie Aker
Contact Phone: 
(310) 846-9272
Contact Email: 

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

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