4th Annual Purple Ball Raises Awareness of Epilepsy

On Nov. 16, guests clad or accessorized in purple, danced the night away at the First Congregational United Church of Christ to raise awareness of epilepsy. Purple is the international color for the condition, and November is Epilepsy Awareness Month. Meghan Kennedy, founder of Epilepsy Education Everywhere, started the annual Purple Ball in 2010 because she wanted to combine two of her passions; ballroom dancing and epilepsy awareness. “I have always loved swing dancing and I had the opportunity to take East Coast Swing,” she said. “I’ve always loved the big band music, especially, and the moves.” Kennedy has been taking dance classes on and off for 15 years and doing performances with her instructors. “One in 10 people will have a seizure in their lifetime,” said Kennedy. “One in 26 will develop epilepsy. Each year you have 50,000 people die from epilepsy-related causes or seizure-related causes, and that’s more people – more people die from epilepsy than from breast cancer or from drunk driving.” Kennedy shared that in spite of these statistics, compared to many other major diseases, research for epilepsy is underfunded. In 2011, $160 million was given in federal funding for epilepsy research, 20 times less than the amount of money for AIDS and 35 times less than the amount for cancer. A table displayed information and resources for epilepsy patients and their loved ones, and purple signs were posted throughout the room showing little-known facts about epilepsy. Kennedy said that one of the biggest misnomers regarding epilepsy is that it is contagious. “People are still afraid of it for some reason, even though it’s been around for millennia,” she said. “Throughout the centuries people like Pythagoras, Napoleon, Joan of Arc, Agatha Christie, Van Gogh, all of them had epilepsy and yet look at everything they did with their lives.” Another misconception, she said, was that you must put something in the mouth of someone having a seizure. “That actually is going to hurt the person more than it’s going to help them,” she said. Kennedy, who was diagnosed with epilepsy as a college freshman 27 years ago and must maintain her diet and medications to manage it, looked back on how the disease changed her life. “I’ve seen many ups and downs, going from not driving to being able to have a license again,” she said. “I’ve had various things where I’ve been on at least 10 [medications] over time. I took 12 years of finding the right drug cocktail. One time I was on a plane and woke up in an emergency room because of a seizure I had on the plane. So there’s a lot of things that I’ve had to deal with [because of] epilepsy. But the thing is, throughout it all, you always overcome it.” Kennedy shared that only about 50 percent of people are able to keep their epilepsy under control. “There [are] people who have hundreds of seizures a day,” she said. “I know I am so much luckier than all of those individuals, so I want us to be able to get out there and raise awareness so that everyone can make life better for all of the other people with epilepsy.” Guests Arturo Almaguer and Nora Siliezar, who have been dating for a year and teach classes for the National Alliance for Mental Health, had heard about the Purple Ball just that morning when it was announced at the dance studio Almaguer was in. “Every time we hear about something to help people, to help an organization, we go,” said Siliezar. The two met through ballroom dancing. The evening’s music, from Signet Sounds, allowed for a great variety of ballroom dancing styles, from merengue to the foxtrot to the waltz and more. Keith and Brenda Breen, who also teach ballroom dance classes professionally, DJ’d the event. Travis and Symphony Runnells, owners of Dancing in Riverside, gave some dance lessons to anyone who wanted to join them on the dance floor. Each lesson began with separating the men and women to opposite sides of the room and teaching them their parts first. Guests were invited to switch partners periodically. “I’ve known Meghan for quite a few years so I’m familiar with her work, her charity, so we wanted to support her and help her in any way we could,” said Travis Runnells. Runnells has been teaching dance for almost 20 years. A few local dance studios gave performances towards the end of the program and a raffle drawing was held for prizes. Catering was provided by World Gardens Café. The decorations were set up by Rialto High School NJROTC members. Though unable to attend due to a family commitment, the recipient of EEE’s first Volunteer of the Year Award was announced that night: Adrian Egli, who has donated hundreds of hours this past year to EEE, and runs the organization’s Facebook page and eNewsletter, Amethyst. “We’re working on getting support groups going as well as a speaker series going,” said Kennedy, describing the plan for EEE’s upcoming year. “Just get out there, learn something about epilepsy so that you can help people,” she said. “If you want us to come to your organization, give us a call and we’ll be happy to come and speak to you about epilepsy. And of course, just get out there and wear purple and support the cause.”