‘Spicerfest’ Shines Spotlight On Rare Disease

June 14, 2016

Jonelle Spicer is a free-spirited “pirate” at heart, holding fast to the mast of her wind-tossed ship as it sails through sometimes rough and choppy waters.

Living with a rare form of muscular dystrophy has not been smooth sailing— that’s for sure, said the slender, willowy Spicer who, with her long, sleek black hair, high cheekbones and sunglasses, bears a strong resemblance to rock star Cher.

Spicer, who navigates around in a wheelchair, suffers from a form of the disease that also afflicts several relatives in her family. Spicer was diagnosed at age 10.

“I’m hopeful there will be a cure in my lifetime,” Spicer said during an interview at a friend and supporter’s home in the Olive Branch area. “There’s not even a treatment for it.”

Amy Kaplan and her family, which includes Amy’s daughter Emily, an honor student at Northpoint Christian School, heard of Spicer’s plight and wanted to help.

Kaplan enlisted the help of photographer Steven Wayne who is donating a major work of art, a large, oversized custom-framed print of the historic Harahan Bridge in Memphis along with other nearby spans, titled “The Three Great Bridges Into the Night,” as one of the auction items.

Wayne, a DeSoto County artist, said he plans to also dedicate a portion of abstract art collection to help finding a cure for the disease that has almost ravaged Spicer’s physical body but not her spirit.

“When people put it on their wall, I hope it will last for a long time,” Wayne said, adding the framed print is printed on special high-quality cotton paper.

Wayne said he was more than happy to take part in raising funds for Spicer. He thanked Kaplan for involving him in the effort.

“When she (Kaplan) called me, she initially wanted to buy a print,” Wayne said. “I wanted to give one. What touched me the most is that she has this disability and she is fighting for a cure.”

For Wayne, the time-elapsed bridge photo is a metaphor of sorts.

An interpretation of the bridge photo suggests that the artwork serves as a visual reminder of a bridge connecting all of humanity — three paths merged into one — with each nighttime traveler embarking into an uncertain darkness.

Wayne’s print is one of several pieces of art up for auction at Spicerfest, set for Murphy’s on Madison in Memphis on June 4, named in Jonelle’s honor more than five years ago.

Musician friends from around the Mid-South are joining together once more to stage a benefit on her behalf and to raise funds for the FSH Society, which promotes scientific and clinical research for facioscapulohumeral muscular dystrophy.

This year’s Spicerfest will be held at Murphy’s on 1589 Madison Avenue in Memphis on June 4. The event will start at 3 p.m. and last until 2 a.m.

The outdoor stage is open to people of all ages but individuals must be 21 and older to enter the pub area, according to Spicer.

A silent auction and raffle items are also planned as part of the festivities.

Spicer and her band, the Bluff City Barnacles, will take the stage at 6 p.m. on the outside pavilion.

“The $22,000 that we’ve raised in four years is a drop in the bucket,” Spicer said. “I’m amazed at the support and reaction that we’ve had.”


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