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The Ties That Bind – A Holy Effort For Epilepsy

The Ties That Bind – A Holy Effort For Epilepsy

Associate Editor

Sunday, September 6th, 2009

Over 3 Million Americans live with epilepsy. One in ten people will have a seizure in their lifetime. Complications may be fatal. At a time of year when the questions of who will live and who will die are on our minds, when we think of Rosh Hashana as Yom HaZikaron, a Day of Remembering, here’s an important and beautiful story by Deborah Riemer about a friendship, remembering, and a friend’s love that lives on beyond death, alerting us to what is shaping us as an inspirational evening this coming Thursday, Sept. 10 to benefit the Anita Kaufmann Foundation’s epilepsy education program. Information about the event follows the story. Deborah Riemer, is a former CBS news producer, CNN reporter in the Middle East, and the first female news anchor for Israel Television’s English News during the first Gulf War.– JM

The Ties That Bind – by Deborah Riemer

When Anita Kaufmann walked into the 3rd grade classroom in Teaneck, NJ, neither she, nor her new best friend Debra Josephs knew, that by walking into each other’s lives they would impact thousands of others. “We walked home from school together and our lives from that moment on, were inextricably bound,” says Josephs.

Anita’s parents, Dutch Holocaust survivors and friends of Anne Frank and her family, lived through the war years in hiding before moving to America to start life anew.

“Anita’s childhood was shaped by the Holocaust,” says Josephs. “She learned early on to have this inner strength and resolve, almost as if she knew she would have to draw from that strength later on in life.”

At age 14, Anita was thrown from a horse at summer camp. She spent four days in a coma, but appeared to make a complete recovery. Like many with traumatic brain injuries, it was not until later in life that the consequences of that injury surfaced. And the young friendship that had blossomed from third grade and deepened through high school, college, first jobs and first loves, was now a strong bond ready to be tested.

“Anita was already an accomplished lawyer. She was smart and funny, warm and gregarious. But when she was diagnosed with adult-onset epilepsy and the seizures began, I watched my friend struggle,” says Josephs. Although she never actually saw her friend have a seizure, Josephs was a partner to her suffering. “It was not so much the seizures themselves, but the stigma of epilepsy—the way the public looked at her—that Anita said was often worse than the condition itself.”

In 2003, Kaufmann, 49, died of complications from a seizure.

In her will, Anita had only two requests: To be buried in Israel – a place which had become a refuge for her in the latter years of her life, and that her best friend since childhood, Debra Josephs, create a foundation to educate the public not to fear people with epilepsy. Josephs honored her friend’s wishes and never looked back.

Established in 2004, Anita’s legacy lives every day in the foundation’s educational presentations offered cost-free to students and businesses across the United States. “We are the only foundation in the country solely dedicated to educating the public not to fear epilepsy and seizures,” Josephs says. The foundation’s groundbreaking fifth grade epilepsy education program has taught over 20,000 children in five states how to recognize seizures and what to do if a friend is having one.

“We not only give students the tools to better understand the condition, but we also send a message about tolerance and inclusion. It is okay to be different,” says Josephs. The program, which has been implemented in schools from New Jersey to Florida, teaches children about different seizure types, methods of diagnosis, causes and prevention, and seizure first aid. It also helps counter myths commonly associated with the condition. “Epilepsy is not contagious, nor is it a mental illness,” says Josephs. “People with epilepsy are just like you and me.”

On Thursday, September 10, five years after its creation, The Anita Kaufmann Foundation is hosting its first Purple Event – an evening mixing fashion with fundraising – to benefit its 5th grade epilepsy education program. Over 60 high-end fashion designers have signed on to help the cause. Each is donating a purple garment, representing the internationally recognized color for epilepsy. “The response has been overwhelming,” says Josephs. “All the glitz and glamour of this event is really the vehicle by which we hope to shine a light on epilepsy,” says Josephs. “And I know Anita will be looking down, beaming.”

The Purple Event — Thursday, September 10, 2009, 7:30–10 p.m, at the Sony Plaza Atrium, 550 Madison Ave. — to benefit the Anita Kaufmann Foundation’s Epilepsy Education program is hosted by The Bachelorette Jillian Harris, and is featuring “Ugly Betty” stars Ana Ortiz and Mark Indelicato, “Real Housewives of New York City” star Alex McCord, New Jersey Nets player Devin Harris, with a musical performance by “American Idol’s” Elliott Yamin. Honorary Co-Chairs are Alan Faneca of the New York Jets and his wife Julie. There will be a Runway show and silent auction with “purple looks” by 60 designers including David Meister, Elie Tahari, Ina Soltani, MaxMara, Nanette Lepore, Nicole Miller and Project Runway winner Leanne Marshall. To learn more about The Purple Event or to purchase tickets, click here.

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