I have personally faced the devastating effects of undiagnosed Epilepsy. My husband passed away due to the severity of his undiagnosed Epilepsy, which ultimately led him to be improperly treated and medicated. He tragically lost his life to an epileptic seizure. This heart-wrenching personal tragedy has compelled me to seek changes in our healthcare system.

Here's the change we need: Early testing for Epilepsy and other neurological conditions in all children. Early diagnosis is crucial for proper treatment planning with the appropriate medical professionals. Not only does this benefit the child's overall health progress, but it also gives parents or guardians peace of mind.

Statistics show that approximately 1 in 26 people in the United States will develop epilepsy at some point in their lifetime (Epilepsy Foundation). 'Benign' epilepsy in childhood can leave enduring marks, affecting health and socio-economic status in adult life (Lancet Child & Adolescent Health, 2020). Despite these statistics, universal screening protocols for neurological conditions in children are notably absent in our healthcare system.

Since 1969, the Epilepsy Foundation has recognized November

Although 3.4 million people and their families are affected by epilepsy in the United States, much is still misunderstood about this brain disorder. People with epilepsy and seizures experience multiple daily challenges, such mood changes, sleep, thinking and memory issues, social and financial concerns. Judgement, and lack of information about the condition can also create more obstacles for members of the epilepsy community. NEAM is an entire month dedicated to uplifting individuals living with the epilepsies and educating the public on what it means to experience seizures.

Epilepsy Through the Years

Over the years, epilepsy has been misunderstood and stigmatized. People with epilepsy have experienced significant discrimination in the workplace, at school, and in other settings. They were forbidden to marry in 17 states until 1956. The last state to repeal this law did so in 1980.

In 1990, the Americans with Disabilities Act (ADA) became law thanks in part to Tony Coelho, former U.S. Representative, and member of the Epilepsy Foundation’s Board of Directors. The ADA prohibits discrimination and guarantees the civil rights of people with disabilities. In 2008, President George W. Bush signed the ADA Amendments Act that restored the original intent of Congress and clarified the definition of "disability" to encompass episodic conditions like epilepsy. Together with the disability community, local offices, business leaders and Congress, the Epilepsy Foundation served a critical advocacy role in helping to pass the ADA and the ADA Amendments Act.

While the ADA made strides in addressing discrimination for people with disabilities, issues continued to persist. Until the passage of the Affordable Care Act (ACA) in 2010, people with epilepsy could be denied coverage for pre-existing conditions. In 2005, nearly 36% of people with epilepsy were refused coverage.

Although 3.4 million people and their families are affected by epilepsy in the United States, much is still misunderstood about this brain disorder. People with epilepsy and seizures experience multiple daily challenges, such mood changes, sleep, thinking and memory issues, social and financial concerns. Judgement, and lack of information about the condition can also create more obstacles for members of the epilepsy community.

Legislation often takes years to pass for changes to be made in the epilepsy community. However, there is no shortage of grassroots campaigns that have helped spread awareness and improve outcomes.

Join me in advocating for a change in the system. Let's prevent other families from experiencing the same grief. We are Accepting Donations via CashApp: $Crossman5555 and PayPal: @MathewCrossSr in order to not only setup the nonprofit program to educate the public and make them aware, but to also assist those families affected by this disease. 

Sign this petition today to require mandatory early testing for epilepsy and other neurological conditions in children.