December 2023 Epilepsy Star: For this issue, Debra Josephs is recognized as our Epilepsy Star for her amazing work as the head of the Anita Kaufman Foundation.
For this issue, we are very pleased to have as or Epilepsy Star, the legendary Debbie Debra (Debbie) Josephs, director of the Anita Kaufman Foundation. Her contributions to the epilepsy community span several decades and are so many that what you will read below is just a sampling of what she has done for epilepsy in her lifetime. We recommend you check in regularly at the Anita Kaufman website (https://purpledayeveryday.org/) because it seems like every time you do, there is a new and wonderful new initiative or resource. For all these reasons and more, Debbie Josephs is our March Epilepsy Star. We can’t think of anyone more deserving!
Tell us about yourself and how epilepsy touched your life?
I grew up in a suburb of northern New Jersey. Life was good and Anita Kaufmann and I became best friends, starting in the 3rd grade. When Anita was 14 years old, she went to summer camp and had a horseback riding accident which resulted in a coma for a few days. Everyone thought she was ok, but it ultimately resulted in epilepsy when she became a young adult (mid 20’s). She started having seizures. This was my first encounter with epilepsy.
How did those experiences lead to the creation of The Anita Kaufmann Foundation? What is the Foundation's mission?
Over time, Anita, who was a brilliant lawyer and businessperson, experienced social and professional discrimination. It wounded her tremendously. Unfortunately, her seizures were misinterpreted while staying at health spa and she was banished. She was told to leave. This scarred Anita who from that time on felt that the discrimination itself was worse than the condition. At that time, she decided that upon her death that virtually her entire estate would be donated to a charity named after her dedicated to help persons with epilepsy from a social perspective.
The mission is about making this a kinder world for people with epilepsy by educating the public about epilepsy, to reduce / eliminate the social stigma associated with epilepsy. And how to help someone who is having a seizure. It is very frightening to see a seizure and not know what to do. Not all seizures look the same and it is important to recognize the different types of seizures. Anita had complex partial seizures and many times people did not recognize them. Most people only know about convulsive seizures.
Anita insisted that I head the foundation because she trusted me and that I would implement her wishes. Whenever I face difficult decisions, I always ask myself what would Anita have done?
Anita understood the discrimination and the misconceptions surrounding epilepsy and wanted to make a difference in this area for all persons with epilepsy.
Tell us about all the ways you educate the public on epilepsy?
We are all about education. One out of ten people will have a seizure during their lifetime. And yet most people do not know how to help someone who is having a seizure. It is not hard to provide seizure first aid. We have developed seizure first aid bookmarks, flyers and large posters in English, French, Spanish and Italian.
In our material we feature actual people who have epilepsy because we want to add humanity to the condition. We list some details about the individual, their occupation, hobbies, and accomplishments. We distribute hundreds of thousands of these items around the world free of charge. One of our most popular items is a scroll pen. You pull the silver lip on the pen and out comes a seizure first aid scroll. This way you have seizure first aid information right at your finger tips!
We provide free seizure first aid trainings everywhere - schools, malls, stadiums, hotels, supermarkets, hotel staff. For ten years we had a fifth-grade program all about epilepsy and seizure first aid. This program reached over 100,000 fifth graders.
We have been told many stories of fifth graders who after this training were able to help someone who had a seizure while the adults did not know what to do. This has happened in malls, restaurants, banks, hotels etc.
We have conducted training sessions for hotel concierges in Los Angeles, New York and Las Vegas.
Seizure first aids needs to be taught everywhere because seizures are so common.
The incredible Purple Day® for international epilepsy awareness is a registered trademark of The Anita Kaufmann Foundation. Tell us what Purple Day® looks like now and some of the parts of the world that it has reached?
Purple Day® has been in existence for over 15 years and it is amazing how it has grown. It is celebrated all over the world (over 100 countries) and Purple Day® has been celebrated in space! One of the astronauts has a daughter with epilepsy and has been celebrating Purple Day® for several years. He wears his purple shirt in space on Purple Day®!
Purple Day® is celebrated all over the world on buildings, bridges, monuments, fountains which are lit up in purple to celebrate Purple Day® and promote Epilepsy Awareness. Other noteworthy places are Niagara Falls, Sydney Australian Opera House, Christ the Redeemer in Rio de Janeiro.
Throughout the United States many different cities and states have Purple Day® Proclamations for epilepsy awareness by governors, mayors and city councils. The Canadian Parliament has officially voted Purple Day® as the National Epilepsy Day.
There are so many ways to celebrate Purple Day® - bike rides, walks, parties. Purple Day® presents an opportunity for students with epilepsy to celebrate epilepsy awareness in their school. Purple Day® shows people with epilepsy throughout the world that they are not alone. Purple Day® is a perfect opportunity for people with epilepsy to educate their community about seizures.
Purple Day® is March 26th every year. The Anita Kaufmann Foundation has come up with a new initiative called Purple Day® Every Day™ which simply means celebrate epilepsy awareness 365 days a year.
Your fundraising ingenuity is legendary (Buddy Valastro). Tell us about some of the most creative, entertaining, and successful events you were part of?
Our signature event for the past five years has been our Purple Day® Event at Disney's Contemporary Resort in Orlando, Florida. It is a full day family event with speakers, an epilepsy expo with comprehensive information and resources, a purple costume contest, and a meet and greet and photo op with Mickey & Minnie. This event is educational and festive at the same time. It also gives families affected by epilepsy the opportunity to meet each other and connect. The families are so happy to participate because they feel a great camaraderie with everyone there. They share stories and try to help each other. It is truly heartwarming.
For the past fifteen years, we have sponsored The Great Purple Cupcake Project where bakeries and individuals who bake and sell purple cupcakes for epilepsy awareness. Every cupcake sold is accompanied by a seizure first aid bookmark.
Every project has an educational component. Another fun project we had was with purple nail polish. We had a nail polish sponsor that donated purple nail polish. Our advocates received donations for the nail polish and painted nails purple. A seizure first aid bookmark was given out with each purple nail polish.
Our first Purple Day® Event was held at Dylan's Candy Bar in New York City. All of the candy was purple. There was a special purple lemonade for the occasion. We also had a band that sang our special Purple Day® Song. One year we partnered with a supermarket chain to hold a chocolate dessert contest where people baked chocolate desserts and three culinary celebrities judged the desserts at a special event.
Another memorable event was our purple fashion show at the Sony Atrium in New York City. Purple fashions were donated by designers and people with epilepsy walked the runway dressed in purple. We also had neurologists walk the runway. It was very exciting.
For three years we held a huge Purple Day® Walk at the largest mall in the US - Mall of America, in Minneapolis. Hundreds of people did three laps around the mall wearing purple. After they finished walking, they enjoyed purple cupcakes and our epilepsy game expo. At Mall of America, we held the largest seizure first aid training session ever. It is recorded in The Guinness Book of World Records. We are proud to say that Purple Day® has united the epilepsy world around the color PURPLE.
Recently we noticed that you are offering several fantastic new resources and initiatives such as The Kindness Box, Lace Up for Epilepsy and Heads Up For Vets. Anything in the pipeline that you want our readers to be among the first to know?
Yes, we recently started offering free legal services for residents of New Jersey. We will help people draw up wills, power of attorney and advanced health care directives. We feel this is especially important for people who have epilepsy as it is important and tends to be neglected. We have plans to expand this to other states in the future.
Our older initiatives have proven to be very effective. For The Kindness Box Project, we send large care packages to epilepsy units in hospitals all over the United States. Our goal is to bring joy to the patients. The box consists of toys, socks, epilepsy awareness materials and candies. For The Lace Up for Epilepsy Project we send purple laces country wide for Epilepsy Awareness Walks, schools, athletic events, bike rides. With every pair of laces, we provide a seizure first aid bookmark. For the Heads Up for Vets, we provide Veterans with epilepsy awareness materials. We have a special project called The Purple Heart Project. Purple Heart Day is on August 7th. We send packages to every Epilepsy Center of Excellence which is a center dedicated to Veterans who have epilepsy. The packages have epilepsy material and of course purple treats.
We have been working with the VA for over ten years and plan to work with them for the years to come. We also help the Veterans one on one with their specific issues. We provide them with the resources they need to deal with their seizures.
The goal of The Anita Kaufmann Foundation is to sponsor fun and engaging events and projects to talk about a very serious subject - epilepsy. Our goal is to spread as much education and awareness as we can. Our goal is to educate the public about epilepsy and to empower people with epilepsy to educate their communities.
The Anita Kaufmann Foundation gives every person with epilepsy a purple gift, because we want people with epilepsy to know how special they are to us.
