Did you know that one in every 26 people will develop epilepsy at some point in their life? Many people don’t, which is exactly why Pennington resident Eric Miller is spreading the word and raising awareness about epilepsy through a series of concerts this summer at his home.
The concert series is called the Candlelight Concerts for Epilepsy Awareness, which Miller started in memory of his late wife, Carolina Barcelos Carneiro de Oliveira Miller, who passed away at the mere age of 25 from Sudden Unexpected Death in Epilepsy (SUDEP) in August 2011.
“SUDEP is a little known and less understood aspect of epilepsy,” Miller said. “It’s kind of like the boogeyman.”
Miller explained how there is a debate between doctors on whether to inform their patients about SUDEP or not to, which is an even harder concept to grasp, especially for epileptics and their families. Even though the statistics are alarming – a recent 2010 study among Italian epilepsy specialists showed that only nine percent of doctors inform their patients about SUDEP – neurologists still have to linger on whether or not to tell their epileptic patients because of the risk of instilling too much fear since it’s a relatively rare happening.
Since Miller has done a considerable amount of research on the condition since his wife’s death, he’s become well versed on all aspects of epilepsy and makes sure to spread awareness about it wherever he goes.
The first concert that Miller held apart from this Candlelight series was only a month after his wife’s passing last year, which coincidentally happened to fall on his wedding anniversary. It was held at Rho Waterfront – formerly known as KatManDu – and was the start of a series of about ten concerts that he held there.
“It was a blessing for me, personally, to start this,” Miller said. “It’s good for me to have something to focus on.”
After Miller’s efforts were relayed at Rho Waterfront, he decided to host a big benefit on March 25, since March 26 is Purple Day, the international day for epilepsy awareness. By holding it so close to the appointed awareness day, the event was a huge success, drawing in Carolina’s family from Brazil, Miller’s family, as well as a fruitful attendee turnout. All of the proceeds from the benefit went to the Epilepsy Foundation of New Jersey.
The event was coined the Candlelight Event for Epilepsy Awareness, and Miller had singers perform that he had a close personal relationship with, such as Marshall Crenshaw, Jeffrey Gaines, and headliner of the event Dan Reed, who also played at Miller’s wedding reception.
Miller explained why he asked Reed to perform, which holds great significance to his cause and naming of the event.
“Dan has a song named ‘Candlelight,’” Miller said. “I had a vivid memory of holding Carolina’s hand during a performance of that song at an event we went to when she was alive, so I didn’t even have to think about it.”
After all of his success throwing events at other venues, Miller decided to take advantage of his musical contacts, many of who are close friends, and start a series of home charity concerts. He works in collaboration with the Epilepsy Foundation of New Jersey and the Epilepsy Project to donate the proceeds to.
“There’s a big network of house concerts in the world, most people don’t know that,” he said.
Miller held the first concert at his home as apart of The Candlelight Concert Series on May 5, which featured his friend and singer Jeffrey Gaines. He attracted 25 people in person and 15 people who were streaming online through a website called Stageit.com.
Stageit.com is a free website for performers to broadcast their performances live via laptop for interactive experiences. The website allows performers to make money, interact with viewers, and reach a large fan base all from the privacy of their own homes.
Performers on Stageit.com are able to choose their own price for what they want to charge viewers, with a minimum of $0.10. Miller charges a “pay what you can” basis.
“For me, it’s more about the broadcast and getting the message out to people everywhere,” he said. “Getting the message out about SUDEP is more important than raising money.”
Also helpful for Miller’s benefits is that Stageit.com only takes a negotiable percentage of the proceeds. Viewers are also able to tip the performers, which Miller uses to donate to his select charities.
Miller learned about Stageit.com from another performer that he knows. By using this website, Miller is able to reach a larger fan base and raise international awareness about epilepsy since people can tune into his concert from anywhere in the world. To learn more about these concerts, visit www.stageit.com/CandlelightConcert.
For his home concerts which can accommodate up to 40 people, Miller charges $15 to $30 per person. All door admission goes to the performers he invites. The Epilepsy Foundation of New Jersey is also in attendance at the concerts to accept donations directly and offer additional epilepsy information and resources.
Miller held the first official concert of the Candlelight Concert series on May 19, which critically acclaimed singer and songwriter Jann Klose performed at as apart of a three-piece band. Thirty people attended and over three-dozen people streamed the concert through Stageit.com.
The next concert Miller will be holding is on Saturday, June 9, and will feature John Wesley Harding, a folk/pop singer and songwriter that has performed alongside Bruce Springsteen, Lou Reed, and REM. Tickets are $25 per person.
Miller will be hosting four more concerts as of now after Harding’s event – Francis Dunnery on June 23, Dan Reed on July 15, Ari Hest on July 22, and Sharon Little on August 11. Tickets for these concerts range from $15 to $30 per person.
Since Miller began hosting these concerts, he has managed to raise nearly $5,000, which has benefitted the Epilepsy Foundation of New Jersey along with other charities.
“Since her passing, I’ve been working tirelessly to raise awareness about epilepsy,” he said. “The personal side of it is so no one has to go through what I went through. I have an urgency about it because my wife died, but there are people that die everyday from it and it’s not really known that people even have it.”
For more information about the Candlelight Concert series or to purchase tickets, visit www.candlelightconcert.org. For more information about epilepsy and the Epilepsy Foundation of New Jersey, visit www.epilepsyfoundaton.org.