Anyone with a Brain can have a Seizure The Anita Kaufmann Foundation Spreads Seizure Awareness

By tara delorenzo

To both honor the late Anita Kaufmann and to spread awareness and education for epilepsy first aid, the Anita Kaufmann Foundation seeks to both normalize any stigma regarding epilepsy and offer help to all those who are affected by it.

Established in 2004, the foundation offers a range of educational material globally to make first-aid knowledge for those having seizures more accessible.

Anita Kaufmann, a New Jersey resident, had loved horses growing up, but a fall as a child where she didn’t have protective gear left her with a traumatic brain injury, which later resulted in epilepsy. In her twenties, as a young lawyer, she was forced to leave one of the country’s top spas after having a seizure there. It was then she decided she wanted to help make a change. She decided to leave her estate to help others avoid the discrimination she faced, and thus the foundation was born. While Anita passed away in 2004, her legacy lives on with the help of the foundation’s executive director and Anita’s childhood best friend, Debra Josephs.

“Anita left us the mission to make this a kinder world for people with epilepsy and to educate the public not to fear people with epilepsy and brain trauma, and that’s all we do: educate, educate, educate – that is what our foundation does, it’s all about education,” Josephs said.

One out of 10 people have a seizure, and one out of 26 people have epilepsy, but the majority of people are unaware how to help when they see someone having a seizure. The Anita Kaufmann Foundation seeks to change that with publications of education materials, such as flyers, posters and bookmarks.

Their materials are available free of charge on their website, https://purpledayeveryday. org, and they sponsor global events to have more interactive ways to get others involved. These events include one of their largest annual events, Purple Day, which takes place every year on March 26.

Purple Day was originally founded in 2008 by 9-year-old Cassidy Megan of Nova Scotia, Canada to increase epilepsy awareness after she wanted a way to help make people with epilepsy feel less alone. The Fourth Annual Purple Day, which this year will take place on March 25, will be held at Disney’s Contemporary Resort in Orlando, Fla. It is a day where they encourage everyone to wear purple – as lavender is the color for epilepsy awareness – and there will be various kinds of educational speakers and resources, as well as sessions and photo opportunities with Mickey and Minnie Mouse, who will also be dressed up in purple. People from all over the country will be attending too to raise epilepsy awareness.

The Anita Kaufmann Foundation also has a veterans’ program with educational resources. To help further awareness and education, National Purple Heart Day is observed every year on Aug. 7, and the foundation sends veterans purple packages with epilepsy educational materials and purple goodies.

Education regarding pet safety with seizures too is also available on their site, as dogs are also susceptible to seizures.

Other initiatives include Lace Up for Epilepsy, where the campaign focuses on swapping out shoelaces for purple laces; The Great Purple Cupcake Project, which is a global epilepsy awareness campaign where bakeries, corporations, individuals and organizations around the globe bake purple cupcakes; and the lavender project, which partners the foundation with lavender farms to help spread educational materials for seizure first-aid, among others.

The Anita Kaufmann Foundation has also sponsored Purple Day walks in the Mall of America, among other places, and has worked with hotels from New York City to Los Angeles, as well as United Airlines, to help educate concierges and airline personnel on how to best aid those who have a seizure.

“Any place we go, we like to educate,” Josephs said. “I’m very proud of our educational materials, and we send it out everywhere – to schools, to police and law officers, to bus drivers. We want to educate the public about something so important and common. If you know what to do when someone’s having a seizure, there’s simple steps and if you know them, you can really help them.”

Josephs also emphasizes that knowing how to help someone can save their life and offers some tips on what to do in a situation where a person needs help when having a seizure.

“You have to stay calm, and you have to move dangerous objects. You time the seizure. If the person has fallen to the ground, turn them on their side and put something soft under their head. Never put anything in the person’s mouth and never hold them down. If the person is wandering, gently steer them away from danger. You seek medical attention for a first-time seizure, if the seizure lasts for longer than 5 minutes or repeats, if the person is injured, pregnant or has diabetes, if the seizure occurs in water, if the person does not resume consciousness or normal breathing and if the person has no idea stating they have epilepsy. These are important things to do,” she explained. educated in how to best help someone who has it. And one day she hopes to have billboard and bus and subway ads to get the first-aid education spread as far as possible. Their goal is to be as creative as possible to help resonate with the public more.

“To be able to add that connection and have their experiences be so diverse and so experiential really kind of prepares them for a lot of different career trajectories that they might be interested in,” Foster said.

Altogether it took Heidi, who works as a retail merchandise buyer for Burlington Stores, about a year to complete the book.

Spencer, who is now in remission, is a graduate of the University of Maryland and works as an associate buyer for a clothing store, was fully supportive of her mother’s effort to share her story, Heidi said.

Those who are interested in working for Bergen’s Promise may call the organization at (201) 712-1170 or visit the career page at www.bergenspromise.org/ careers.

Instructions on first-aid tips can be found on their materials, which Josephs encourages people to get and try to send to their favorite restaurant or local schools or libraries to help educate and raise awareness.

“I hope other families find comfort in this book,” said Heidi. “It’s what’s inside that really matters.”

To get involved, Josephs encourages everyone to go to purpledayeveryday.org for educational materials and spread the word around the community. Her hope is that with more people having access to the materials, the world will be kinder to those affected by seizures, as was the goal of the founder Anita.

Since its release, Heidi has donated copies to several non-profits that work to help children facing hair loss while battling cancer, including Coming Up Rosies, Sunrise Day Camp and Cohen’s Children’s Medical Center.

“Whoever’s out there that feels that we can help them come in and do this job – and help us to do the job – that would be a great service to the community,” Pastras said.

It has also received the endorsement of several medical professionals for its uplifting message.

“We’re one community, but epilepsy is a spectrum,” Josephs said. “It’s hard work because there are so many misconceptions and people don’t know what to do. Getting out the education and important information is so important, and that’s what Anita’s vision was and I, as her best friend and the executive director of the Anita Kaufmann Foundation, am trying my best to fulfill Anita’s wish.”

To access help for your child, you can call PerformCare at 1-877-653-7624. The call center is available 24 hours a day, seven days per week.

“Cancer treatment, especially chemotherapy and radiation, has a profound effect on each patient’s body image and no side effect has a more noticeable effect on how a patient looks than hair loss,” said Dr. David Loeb, Chief of the Pediatrics Division of Pediatric Hematology/Oncology at Montefiore Medical Center in the Bronx.

“I think Anita would be very proud of us,” Josephs said. “I’m very proud of the Anita Kaufmann Foundation. With Purple Day, we have united the entire epilepsy world under the color purple. Beforehand people were using all different colors and now we’re all one under the color purple and that’s all because of the Anita Kaufmann Foundation working so hard.”

For more information on Bergen’s Promise, visit www.bergenspromise.org.

He also said, “This inspiring book addresses this issue head-on and it provides the powerful and supportive message that you can be awesome and beautiful and full of love, even without hair.”

Moving forward, Josephs hopes to normalize the

For more information about Purple Day events, which will be March 26, and on the Anita Kaufmann Foundation, visit purpledayeveryday.org.

Copies of “I Have No Hair and I Don’t Care” are available for $15.95 each at ALifeIn