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Color It Purple: Increasing Awareness About Epilepsy

goingPurple

How the world is coming together to spread a young girl’s message

We’re getting ready to go purple on March 26. We’ll be joining people from around the globe who will be wearing purple clothes, ribbons, and hats—and yes, digging into purple cupcakes to support Purple Day®. It’s a special day to support those who have epilepsy and to educate those who don’t.

Purple Day was founded in 2008 by Cassidy Megan, a Canadian schoolgirl who came up with the idea at the age of 9 because, as she wrote in her Purple Day Blog, epilepsy made her feel very much alone. “I really thought I was the only kid with epilepsy,” she blogged.

We recently asked Cassidy, who turned 16 in January, about what she went through back then. “I didn’t really want to talk to anyone about it,” she said. In second grade, she said she told some of her friends she had epilepsy. There were times she got cut out of sleepovers and camping trips because some of her friends and their families were afraid. “They just didn’t know what to do,” she explained.

As a result, Cassidy told her mom, Angela McCarthy, that she wanted to have just one day a year when people with epilepsy would know they weren’t alone and didn’t have to be afraid or embarrassed by their condition. She also wanted people who didn’t have epilepsy to understand that there are different types of seizures and to learn how to help if they see someone having a seizure.

Cassidy Megan named Purple Day after the internationally recognized color for epilepsy, lavender. Lavender, she told her mom, is a shade of purple. “I told her I wanted my family, school, and people around the WHOLE world to do this,” she blogged. “My mom said, ‘Oh, well, let’s just stick with our community for now.’ ” That was then. This is now: Purple Day has gone global.

Today, Purple Day is honored on every continent, including Antarctica

Megan was awarded the Canadian Red Cross Young Humanitarian Award for her Purple Day work in November 2013. Her “Purple Day Partners” have grown to include epilepsy organizations worldwide. The Anita Kaufmann Foundation, along with The Epilepsy Association of Nova Scotia, is a global sponsor of Purple Day.

Ironically, the accomplished attorney for whom The Anita Kaufmann Foundation is named felt as alienated by epilepsy as Megan had at age 9. Debra Josephs, executive director of the foundation (and Kaufmann’s longtime childhood friend), said Anita Kaufmann always felt that the public misconceptions about epilepsy and the resulting stigma were far worse than the condition itself.

Josephs said Kaufmann was on vacation at a spa when she had her first seizure; she was asked to leave. “At that moment, she decided to establish a foundation,” said Josephs. Anita Kaufmann died on November 26, 2003 and Josephs established the foundation in her friend’s name a year later.

Megan’s goal: Making the world “epilepsy-friendly”

Both Cassidy and Josephs believe attitudes toward epilepsy are changing as more and more people learn more about it. “Changing attitudes is a huge, huge task,” said Josephs. “That is not done overnight.”

The Anita Kaufmann Foundation provides free seizure first aid training sessions in restaurants and other retail and corporate businesses. (One in 10 people will have a seizure in their lifetime, according to the Epilepsy Foundation.)

Josephs credits Purple Day as the main vehicle for changing public attitudes. Cassidy said she’s happy with the progress that Purple Day has made, but admits there is still a lot to do. For example: People still need to know “that it is not OK to make jokes about epilepsy or seizures…and we still need to change how they show epilepsy on TV and in the movies,” she blogged.

The dream of the Purple Day founder and organizers is that one day people with epilepsy will be accepted in much the same way as people with glasses are today. Until then, Cassidy just wants to send this shout-out in advance of Purple Day: “I want to thank everyone for their Purple Day support.”

What can you do for Purple Day?

Cassidy will be joining The Anita Kaufmann Foundation for its Purple Day® Walk for Epilepsy & Brain Games on March 21 at the Mall of America in Bloomington, MN. (Even though the walk is not exactly on Purple Day, Josephs said: “People just don’t have epilepsy one day of the year. Purple Day is every day…That’s our new campaign.”)

If you want to join a Purple Day activity, check your local epilepsy organization to see what they may have planned, or visit www.PurpleDay.org. or www.PurpleDayEveryDay.org for other ideas on how you can help. Here are a few suggestions from Cassidy: Ask businesses and schools in your area to have a Purple Day event. Ask your favorite sports team to get involved. And don’t forget the cupcakes! Ask bakeries in your area to join in the Purple Day Great Purple Cupcake Project.

March 6, 2015 | Categories: General

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