In 2010, at 53 years old, Newark resident John Smith was diagnosed with Multiple Sclerosis. He says that like a lot of other people he's spoken to with MS, his diagnosis came years after his first symptoms appeared. He went through years of misdiagnosis and doctors that were unknowingly treating his symptoms individually, rather than as the unlucky combination that occurs with MS.
As a musician, Smith was worried about how the disease, which attacks the central nervous system, might affect his playing. He fronts the cover band Acoustic Jam and the diagnosis coincided with a new regular gig schedule at Aqua Sol Restaurant in Bear. However, Smith has also spent much of his working life as an education coordinator with Christiana Care Health System and he knew he needed to get educated quickly. But, he also wanted to educate others about MS as well. So, by 2011 he had organized his first MuSic Extranvangza, a fundraiser and community awareness event that benefits the Delaware Chapter of the National Multiple Sclerosis Society. Nearly 600 people attended, raising $2,500. Last year, due to weather and scheduling conflicts with other events, about 400 people attended. However, the event nearly doubled its first year donations, raising close to $5,000. This year, Smith is hoping to see even more people and raise even more money on Saturday, Sept. 7 with his 3rd annual extravaganza.
"Last year, we took a beating with the weather. It was also move-in day at local colleges" Smith said. "We thought that if we moved it to early September, we wouldn't have to compete with other August festivals or end-of-summer vacations."
MS and music
The "MuSic Extravaganza" will feature eight bands across two stages. Several of the bands who performed last year, like Hot Breakfast and Katalyst, will return to support the festival this year.
But, some new acts will be there as well. And, while most of the artists performing can claim to have at least one acquaintance or family member with MS, singer/songwriter Kristie Salerno Kent, who will be flying in from Atlanta, Ga., has a personal stake in raising awareness about MS.
Diagnosed in 1999, Kent said that, for years, the disease robbed her of the things she loved: music, family planning, walks with her family, events with large crowds. But, she also admits that MS wasn't doing the dirty work alone. For the first couple of years following her diagnosis, she sunk into denial, routinely telling her doctors that she was fine. She was no longer pursuing her passion of music but was instead working in public relations, booking dates for other artists, musicians and authors.
Page 2 of 2 - "I loved that job and learned a great deal about the other side of the business," Kent said by phone from Atlanta. "But, I missed performing. I missed my passion."
She said that the "real, true catalyst" that snapped her out of denial came through an opportunity that job provided her, though. Kent booked a musician for a gig in Atlanta and made plans to go see it as well. That night, the singer couldn't make it so the producer asked Kent if she could come onstage and sing one of the songs, "Whatever Makes Your Soul Sing," which is also one of Kent's favorite songs. It was a tall order. Kent had not performed in public in years and the producer was also the songwriter. She pushed it all aside, though, and went for it.
"That moment, getting up there and singing that song was a defining moment for me," Kent recalled. "I wasn't going to be a victim. I was going to follow my passion."
She started writing and soon after, she quit her job to focus on writing, producing and performing her music. In the years since, she has also written a book, made a short documentary and produced an album full of music inspired by her experiences.
But, it's the opportunity to attend awareness events like the MuSic Extravaganza that she gets most excited about. She knows that she'll likely be performing for other people struggling like she did for so long with MS.
"At my first performance at an MS event, one man came up to me afterwards. He struggled so hard to get out of his wheelchair just to give me a hug," Kent said. "I'll never forget it. Moments like are why I'm so excited for festivals like the one in Delaware."
Most of the day will be dedicated to music. However, education is a big part of the event as well. To make the learning fun, though, Smith has devised a "poker run" game that will take visitors to one of five tables, each one explaining a different facet of MS education, from symptoms to treatment. Visitors who participate will also be eligible to win a "gift card tree."
Smith hopes people will participate and learn more about the disease that affects more than 1,500 people in Delaware.
"For me, the response I get afterwards is the best part," Smith said. "People tell me how what they learned enabled them to reach out to family or friends suffering. In that moment, they became someone's support. It makes all this worthwhile."