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Who we are: It's all about epilepsy awareness

We are a medically backed, data-driven, research-based community that produces tools and resources to improve the quality of life for those dealing with epilepsy in one form or another.
Epilepsy Wellness Advocates is privately funded to ensure agnostic approaches for patients, that makes us free of ties to any specific organization. Our only “agenda” is to increase epilepsy awareness and provide support for you and others. We’re beholden to no one but you


Who is Charlie Shor?
How his story impacts your life

Charlie Shor’s life story is the stuff of novels. But Charlie is a real person.

He’s endured massive cluster seizures and breakthrough seizures. He tried meds that didn’t work and messed with his brain. He suffered through surgical procedures that promised to help but didn’t.

Today Charlie is in the unique position to offer hope and practical solutions for people diagnosed with epilepsy.

At the age of 23, the driven young Charlie was already being groomed to take the helm of Duro Bag, a paper bag manufacturing company his father founded decades before.

Little did Charlie know that two years later, the course of his life would change forever.

Charlie was getting off a plane in Manhattan, NY in 1979 when he had his first seizure.

He had no idea what happened or why, and was left bewildered and dazed.

More seizures came along at the most unexpected times, almost daily. Finally, Charlie was diagnosed with epilepsy.

At the time, there was no cure and no understanding of what might provoke a seizure. He was simply prescribed medication – with horrible side effects – and sent on his way with no answers. No explanation. No hope.

More frequent epileptic seizures

Despite these setbacks, Charlie did not let epilepsy slow him down. But life soon became more difficult. At 28, Charlie was kidnapped and buried in a pit for almost two days before narrowly escaping. He believes that additional trauma led to increased epileptic seizures.

Soon after, Charlie later took over as president of Duro Bag, and the pressures of the business were unrelenting. Plastic bags had just come on the scene, and the company’s livelihood was in jeopardy. Charlie shouldered the responsibility of stabilizing Duro Bag as it struggled to compete. Eventually, he steered the organization to grow into the largest paper bag manufacturer in the world.

All the while, the stress continued and his health suffered.

Charlie successfully led Duro Bag until 2014. That’s when he started the Charles L. Shor Foundation and shifted his vision, energy and efforts to funding epilepsy research.

Personalized treatment plan produces results and insights into epilepsy as a disability

Charlie had spent decades searching for the right fit for his medical care and his ideas for research. He was convinced of a link between seizures and stress, but no one in the medical profession was making that same connection.

“Epilepsy beats you up intellectually. You feel as if you’ve been hit countless times. You wake up and don’t remember what you were talking about. You don’t remember so many things.”

Nevertheless, he knew that one day he would find a doctor who would take time to consider his theory. That day came when he met Dr. Imad Najm, MD, of the Cleveland Clinic. Together they developed a personalized treatment plan for Charlie that involved medication, sleep apnea treatment and lifestyle modifications, including diet and how to manage triggers for stress.

It worked! And the difference was remarkable. Today, Charlie is still on medication, but typically only has one seizure per year. He is thankful for the progress he has made with the help of Cleveland Clinic, but knows the fight against epilepsy does not end with him.

How this relates to you and your own epilepsy awareness

After his personal treatment plan got his seizures under control, Charlie asked his doctor a simple question that would transform the focus of research as we know it today. “Many people are already researching medications and surgeries for epilepsy. Would you be willing to initiate a study that looks beyond medication or surgery?” Dr. Najm was immediately interested. He understood the potential to impact millions of lives with this new focus, and responded, “I’ve never been challenged like you are challenging me here,” and agreed to spearhead the initiative. Charlie has initially committed $5.5 million to fund the landmark study to examine different ways that non-pharmaceutical efforts can help others with epilepsy. Specifically, the research will look at the effect of health optimization — particularly stress relief — on seizure control, as well as memory preservation and restoration among a group of 1,000 patients whose epilepsy is difficult to treat. The primary goals will be to find new ways to fully control seizures using alternative non-pharmacologic interventions, to improve and prevent memory decline in patients with epilepsy, and to organize international conferences that spread the word about these non-pharmacologic stress control interventions and their effects on both seizure control and memory function. “Through this research, I’m hopeful that when someone has a seizure, they’ll first take a look at what’s happening in their life before they look at taking medicine,” Charlie said. Dr. Najm’s is optimistic the study will help researchers discover approaches that will transform the lives of people living with epilepsy. That would be the greatest reward of all, he said. While stress is the subject of the current study, Charlie is a proponent of learning about other common seizure triggers, as well as tracking and understanding what triggers your own seizures. Then advocate for yourself by asking your medical team questions and making sure you are being heard. Epilepsy Wellness Advocates is a great forum to start such discussions.

Cleveland Clinic’s Neurological Institute offers new hope and advances in epilepsy awareness

Shifting the focus of medical research to more holistic efforts was just the start for Charlie. To demonstrate his appreciation for the outstanding care he received at the Cleveland Clinic, while continuing to help others with epilepsy, Charlie additionally committed more than $10 million toward the construction of a new Neurological Institute building on Cleveland Clinic’s main campus.

The Cleveland Clinic already sees thousands of people each year, and this facility will ensure that they can see more.

The chair of the Neurological Institute, Dr. Andre Machado, MD, PhD, said it promises to be the launching pad for what refers to as a “moonshot” ambition: stop neurodegenerative disorders such as Alzheimer’s and Parkinson’s disease from developing in the first place, rather than treating them after they have developed. And the institute hopes to both treat and cure such disorders within our lifetime.

The specialties of neurology, neurosurgery, psychiatry and rehabilitation will come together under one roof specifically designed to serve the unique needs of people with neurological conditions.

For example, in the “waiting room of the future,” advanced technology will capture neurological functions as digital data during the intake process. Instead of playing with their phones or watching television before their appointments, patients will complete digital assessments to measure neuroperformance. The results will be available immediately for review with their caregivers.

The Cleveland Clinic announced that the epilepsy center in the new complex will be named the Charles Shor Epilepsy Center, in gratitude for the donor’s generous gift.

“The building looks exciting, but most importantly, the people inside the building and the care and devotion that they bring are key,” Charlie stresses.

“Putting patients first makes the patients’ confidence so much stronger. It also makes the doctors cognizant of why they are there, what needs to get done and why it gets done. No matter who you are, all patients are going to be treated extremely well.”