Epilepsy Foundation Nebraska

About Epilepsy Foundation Nebraska
We are the Epilepsy Foundation. We exist to END EPILEPSY®. That means increasing awareness and changing the conversation around epilepsy, improving and saving lives through care, advocacy, research and new therapies, and education, and mobilizing everyone to take action.

Programs & Services Offered

  • Our local Epilepsy Foundation Nebraska chapter provides direct services and connections for individuals and families impacted by seizures and epilepsy.

  •  We provide educational support for individuals and families to help make sure they can manage and control their seizures to the best of their ability. We educate the general public to help improve understanding of epilepsy and seizure recognition including our Seizure First Aid Certification training. All training programs are free to the participants.

  • In April 2019, young Erin Hurt lost her life from Sudden Unexplained Death in Epilepsy (SUDEP). Shortly thereafter, Erin's mom Allison Hurt took steps to honor her late daughter by building a program with a goal to prevent other families from experiencing a loss like hers. Allison joined the Epilepsy Foundation Nebraska Board of Advisors and pursued the development of what has become Erin's Embrace Project.

    SUDEP is the sudden, unexpected death of someone with epilepsy, who was otherwise healthy. In SUDEP cases, no other cause of death is found when an autopsy is done.

    Each year, more than 1 in 1,000 people with epilepsy die from SUDEP. This is the leading cause of death in people with uncontrolled seizures.

    Erin's Embrace Project is a program unique to the Epilepsy Foundation Nebraska. It provides seizure alert devices for those in need. Specifically, Allison and the Board have elected to provide the Embrace2 by Empatica, the only seizure alert device with approval of the Food and Drug Administration. The manufacturer also requires a doctor's prescription to obtain an Embrace2 device.

    The Embrace2 is a wearable smartwatch-like device that pairs via Bluetooth with an Alert Application. When a tonic-clonic or other convulsive seizure is detected, the Embrace2 sends a signal through the application to a designated caregiver's phone alerting to the seizure activity. The alerted caregiver is then able to respond with appropriate seizure first aid as needed.

  • Our epilepsy research ecosystem covers the entire spectrum of discovery – from the idea to market. We foster the development of new scientists and support research that leads to better treatments and care and an end to Sudden Unexpected Death in Epilepsy (SUDEP).

  • We are committed to people with epilepsy, their family members, and caregivers; to advocating for funding for epilepsy programs, research, and a cure; to policies that promote research and innovation; to improving access to and coverage of quality care and essential services; and to the protection of the rights of individuals with disabilities.

  • With the support of dedicated senators, the Epilepsy Foundation, and many grassroots advocates, Nebraska is one of 18 states that has enacted Seizure Safe Schools legislation. All school personnel will be trained to recognize and respond to seizures through our free and on demand Seizure Training for School Personnel and Seizure Training for School Nurses programs.

Did You Know

  • 19,600 people are living in Nebraska with active epilepsy; including 2,800 children.

  • Approximately 1 in 10 people will have a seizure in their lifetime.

  • 1 in 26 people will be diagnosed with epilepsy.

  • Epilepsy is the 4th most common neurological diagnosis – only migraine, stroke, and Alzheimer’s disease occurs more frequently.

  • For more than five decades, the Epilepsy Foundation has shone a light on epilepsy. The Foundation and its nationwide network of nearly 50 partners 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.

You Can Help

  • $25 creates a New to Epilepsy and Seizures kit for newly diagnosed patients.

  • $50 provides a month of Support Group Meetings.

  • $100 supports a Seizure Training for School Personnel.

  • $250 helps purchase a seizure alert device for an individual in need.

  • $300 sends a child to Camp You Can.

  • $1000 supports Seizure First Aid Certification Training to keep our community seizure safe.

  • $2500 sends a teen advocate to the Public Policy Institute at Teens Speak Up! to meet with legislators in Washington DC.

Dollars At Work

  • Funded nearly 100 Embrace2 watches through Erin’s Embrace Project.

  • Supported campers financially to attend Camp You Can.

  • Over 16,000 individuals are Seizure First Aid Certified.

  • We helped pass Seizure Safe Schools legislation ensuring all school personnel throughout the state (public and private schools) will complete Seizure Recognition and Response training as well as additional safety measures for students with known seizure disorders. 200 nurses were trained at the 2022 Nebraska School Nurses Conference.

  • Hundreds of Nebraskans received information and referral case management support services last year.

Contact Info
402.715.9422 | nebraska@efa.org | website | 6001 Dodge Street, CEC 228.7; Omaha, NE 68182-0598