Why we are helping you

Our story: It's more than epilepsy awareness and support

Epilepsy Wellness Advocates is different from any other epilepsy organization you’ll encounter. We were created by Charlie Shor, who has dealt with epilepsy for nearly 40 years. He’s suffered through seizures (including cluster and breakthrough seizures), medications, and surgeries. He’s been through it all.

Frustrated by a lack of holistic research, Charlie is devoting his time and net worth to help support others with epilepsy. He wants to create solutions where there previously were none, with an emphasis on expanding epilepsy awareness.

For years, Charlie was convinced of the connection between stress, diet, sleeplessness and the frequency of seizures. He wanted to understand why he was having seizures and the 7 common seizure triggers. But no one in the medical community had studied such relationships. Now Charlie works with leading healthcare providers like the Cleveland Clinic to invest in such research while advocating for a cure.

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Help us help you manage epilepsy

When Charlie Shor was diagnosed with epilepsy at age 25, he had no idea what lay ahead or that one day his life would intersect with yours.

Charlie’s diagnosis led him on a path to search for answers for everyone with epilepsy.

Help us help you. Epilepsy Wellness Advocates brings to life Charlie’s vision to build a community of support and be the single source of news, ideas and resources to help anyone touched by this disease. You are now part of this network. You are part of the community. Together we can work to help alleviate the daily struggles associated with epilepsy, reduce seizures and ultimately find a cure.

Let's build a community focused on epilepsy awareness

The strength of Epilepsy Wellness Advocates is that it’s an inclusive community built to support you through your fears, questions, treatments and successes. We can all help each other by sharing tips, and we’ll use data to substantiate any ideas that could help you improve your quality of life. That’s our promise.

A tip as seemingly minor as wearing an epilepsy bracelet for safety can make a huge impact. Imagine a treasure trove of tips, ideas, and research that you can explore at your own pace. 

Having access to all that information and trying it out is what epilepsy management is all about, and we are in the process of bringing that goldmine to you.

While other epilepsy support organizations are focused on medical research or raising money, the Charles Shor Foundation already has the funding we need to continue this fight for decades to come. Our primary priority is on finding ways to help improve the quality of life of those dealing with epilepsy, focusing on epilepsy awareness.

Our efforts are focused on you, not on securing donations from you. All we ask is that you participate in the conversation because the more you engage, the more we can help one another.

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Epilepsy in the United States: a call for increased epilepsy awareness

diagnosed with epilepsy
More than 0 people
Current treatment effectiveness
0%
Only 46% of patients can effectively control their seizures using current treatments.
Source: Cleveland Clinic

Common fears and challenges in epilepsy management

Getting an epilepsy diagnosis unsettles your very foundation. Many people struggle with shock, isolation, and how many aspects of life are restricted by epilepsy. If you can relate to any of the following difficulties, we encourage you to join our community of like-minded individuals who want to help reduce these challenges and expand epilepsy awareness.

Mental health struggles

Isolation, stigma, discrimination, and ignorance about epilepsy lead to emotional instability and mental health issues, including loneliness, anxiety, depression, and fear.

Unpredictable seizures

Not knowing when and where the next seizure will occur disrupts your ability to perform daily activities and often generates fear for not just patients, but their families and caregivers, as well.

Medication side effects

Medicines can be highly debilitating, with side effects like mood changes, drowsiness, and memory loss.

Limited motor skills

The inability to perform basic motor functions like driving can hamper your independence, livelihood, and ability to socialize.

Restrictions on employment

Epilepsy limits your ability to secure or maintain employment due to absences, discrimination or safety concerns.

Increased financial burden

Ongoing costs for treatment, medication, and accommodations to enable people with epilepsy to live their daily lives take a toll. Those without insurance might not get the medications or help they need.