Everything about our lunch at the restaurant was perfect. There was nothing more to ask of the service, of the restaurant, the atmosphere. But Debra Josephs did ask for one more thing. As we left she introduced herself to the manager of a Newbury Street (Boston) mainstay and asked if they had any literature about seizures for their employees.

She explained that she was with The Anita Kaufmann Foundation and took out a book mark and asked if they would give out this information to their employees. The manager immediately agreed. Not to miss an opportunity to educate about epilepsy, Debra went to her car and returned with an armload of literature.

And the manager was so pleased that when I returned the following week, he smiled and said, "We have already posted the information from your friend."

Debra said she believes that the message about epilepsy must be given out at malls, at restaurants, at schools. She is a crusader because her mission is to honor the wishes of a friend whom she met in the third grade. "We walked home from school together, and we remained friends until the day she died. But we will always keep her alive. Her beautiful face is on every piece of literature we create, every poster, and every tee shirt. Anita is the driving force behind our dedication to educating the public about epilepsy and erasing misconceptions."

Debra Josephs (far left) with her team at the Epilepsy Walk

Who is Anita?

At age fourteen, Anita was thrown from a horse while riding at summer camp. After four days in a coma, she seemed to make a perfect recovery. Anita was a brilliant student and graduated magna cum laude as an undergraduate from the University of Pennsylvania and went on to obtain her law degree from Georgetown University. Her career blossomed. She worked as an associate with one of the top law firms in New York City. Anita was a forerunner in the area of legal recruitment. Her clients included Fortune 500 companies, major Wall Street financial institutions as well as prestigious international law firms. In her thirties, Anita developed epilepsy as a result of her horseback riding accident.

What is the greatest challenge to educating people about epilepsy?

There is a stigma. People are afraid and even the most educated do not understand epilepsy and seizures. Everything we do is about education. And every piece of literature that we produce is free of charge and reviewed by a physician. But one of our challenges was finding out at which age education would have the greatest impact. We have pinpointed the fifth grade.

What are the plans for fifth graders?

A program called "Thinking About Epilepsy. Fifth Grade Program". This is a 5^th grade curriculum unit that was initially devised by the Epilepsy Support Centre in Canada and is currently being implemented by the Epilepsy Foundation of New Jersey in conjunction with The Anita Kaufmann Foundation. It is called "SHARE – Students Hearing About and Recognizing Epilepsy, Changing perceptions through education". By the end of the current school year, the program will have reached over 7,000 fifth graders in New Jersey. Our goal is to educate every fifth grade student in the country. We plan to launch the fifth grade program in New York, California, and Washington DC in the upcoming year. We have just set up a new website and it describes this program.

How did epilepsy change Anita’s life?

Anita decided to take a holiday at a world famous spa which specializes in wellness. One afternoon during yoga class, Anita experienced her first seizure. While she did not remember the incident, she did remember being ordered into the office of the Executive Director, scolded, and being told she needed psychiatric treatment. She was ordered to pack her bags and leave the premises immediately. She was then taken by limousine to the airport and stood all alone dumbstruck by the situation. From that moment on, Anita resolved to help others avoid the discrimination she experienced.

Did the spa that sent her home understand what they had done?

Once our foundation was established, I went back there and talked with them. And I wanted them to know how committed we were to helping others recognize signs and symptoms of epilepsy and treating people who have epilepsy with dignity. We sent our medical director and spokesperson to the spa to educate all of their employees about seizure first aid.

What other projects are taking place to promote awareness?

We have spearheaded the Epilepsy Awareness Initiative, which consists of every major epilepsy organization in the tri-state metropolitan area of New York, New Jersey, and Connecticut and for which Blanca Vazquez, MD, of the New York University Comprehensive Epilepsy Center serves as medical director. Our goal is explore some of the popular misconceptions about epilepsy and direct the public as to where they might obtain information and services about epilepsy and seizure disorders. No mother, no father, no child, no family should ever have to be treated shamefully because they have epilepsy. Education, education, education is key.

The Anita Kaufmann Foundation

Submitted on April 23, 2008
Edited by Steven C. Schachter, MD