Bon Bon Bellevue Tackles Rare Disease


JUNE 28, 2006
by DANICA WRIGHT BOOTH, Staff Writer
Tennessean


Bellevue United Methodist Church will be filled with the sweet scent of desserts tomorrow night, but the event is not all sugarcoated.

The true purpose of the evening, "Bon Bon Bellevue'' is to raise money through requested $5 donations and a silent auction for a rare disease called pseudoxanthoma elasticum or PXE.  PXE causes calcium or other minerals to deposit in elastic tissue. This causes everything from lesions on the body to loss of sight.

Chris Cutler, owner of the scrapbook store Paper Moon, began the dessert-tasting event last year to raise money for research and awareness of the disease by enticing Bellevue residents with sweet treats.  "Chris, who is very community-service minded, was talking to me one day about the disease I have," said Julia Holman, "and she said, 'Why don't we do a benefit event to raise money for research?' "

Holman was diagnosed with PXE when she was 9 years old. In 1997, she lost most of her ability to see. After she came to work at Paper Moon five years ago, Cutler invested in ZoomText, a magnifying system for the store's register to make Holman's work easier.

 

Sales clerk Julia Holman works on scrapbooking with the aid of extra-strength glasses at Paper Moon scrapbooking and cardmaking store. Holman has PXE, a disease that destroys parts of her vision. Paper Moon will play host to the Bon Bon Bellevue fundraiser to raise money and awareness for PXE. (DIPTI VAIDYA / THE TENNESSEAN)

Julia Holman's Glasses

Holman also has been able to see a vision specialist who fitted her with binocular glasses, which enabled her to drive again after seven years.  Julia Holman is able to drive now, thanks to these special glasses that compensate for her lack of central vision. (DIPTI VAIDYA / THE TENNESSEAN) 

 

 

 

But many in her situation are not so fortunate. It is estimated that PXE affects from 1 in 25,000 to 1 in 100,000 adults, but because of lack of funding, accurate assessments of the disease's reach are impossible.

The money raised at Bon Bon will actually go to PXE International, a nonprofit organization formed 10 years ago by a mother and father whose child had the disease. Their goal was to fund research so that when their children were old enough to begin experiencing symptoms, they would have found a cure.

Last year's event raised $5,500, in part by selling handmade cards. This year's event has expanded to include a small craft bazaar and live entertainment by Christian singer eLi.  The donated desserts include items from City Limits, Shoney's, and Publix. The silent auction will include donated vouchers for everything from landscaping services to haircuts.

"It's great how the area businesses have come together and helped us with this," Cutler said.

Cutler spread the word on the event by sending out e-mails to the 1,500 customers in her database. They have responded by donating cards to sell and by promising to show up tomorrow to indulge.

And Holman says not to worry about the effect so many desserts might have.  "When you eat chocolate for a good cause," she said, "I don't think it has any calories."