Website note: Adams Outdoor Advertising is a proud partner of the Crystal Ball and donated graphic design services and six billboards in and around Virginia Beach to help promote the fundraiser and its efforts to find a cure for MD.
CRYSTAL BALL
GREAT NECK MOM GETS PERSONAL IN
FIGHT FOR MD CURE
By Rita Frankenberry, The Virginian-Pilot - 1/11/2009
VIRGINIA BEACH
Each year, Great Neck resident Linda Fox-Jarvis personally delivers a check to a group of muscular dystrophy researchers.
She prefers hand-delivering the check – usually around $200,000 – because she likes knowing that 100 percent of it will be used to fund research for the muscle-wasting disease.
Since she began the annual Crystal Ball fundraiser eight years ago, she has helped raise more than $1.3 million to find a cure for muscular dystrophy. But despite all that funding, she said, she still doesn’t feel like she’s doing enough.
“As a mother of a child, ever year after the event there’s a bit of a let down because yes, we’ve raised all this money, but my son still has a neuromuscular disease,” Fox-Jarvis said.
Fox-Jarvis’ 24-year-old son, Brian, was diagnosed with limb girdle, one of the 43 muscular dystrophy disorders for which there is no cure. The muscles around the shoulders and hips – closest to the limbs – are first affect ed by weakness with this specific disorder.
Since his diagnosis at 15, Fox-Jarvis began brainstorming ways she could help her son fight the disease. The annual Crystal Ball gala, she said, is a yearlong process she undertakes just for Brian.
“It was pretty devastating to us,” Fox-Jarvis said, recalling the day they learned Brian had muscular dystrophy. “So I said, ‘Well, if there is no cure, I’m going to help find one.’”
Every year, planning for the annual Crystal Ball fundraiser begins soon after the event is over. For the past several years, the event has been held at the Hilton Virginia Beach Oceanfront, where it will be held this Feb. 7. This year’s theme is a Venetian masquerade.
The black tie event – which includes a cocktail party, dinner, casino night, dancing and both live and silent auctions – costs little in overhead. Fox-Jarvis said every year, a host of volunteers, sponsors, donors and advertisers help to keep costs for the fundraiser low.
“Really, our sponsors cover everything,” Fox-Jarvis said.
Although there are other local fundraisers that help the area MDA office pay for things like clinic visits, medical equipment and maintenance, support groups, seminars and summer camps for youth, the proceeds from this event are earmarked.
“All of this money goes toward research,” said Becky Freed, district director for MDA. In the Hampton Roads-Tidewater area, including parts of Northeastern North Carolina, Freed said more than 900 families are assisted by the area MDA office.
Virginia Beach resident Derek Bolton, 27, is just one of the area members who has been helped since he was diagnosed. He remembers playing T-ball when he was 6. Bolton was running the bases when his parents noticed he wasn’t running like the other kids.
“My motor skills weren’t as developed,” Bolton said. “So that’s when they had me checked out.”
A biopsy of his leg muscle revealed that Bolton had Duchenne muscular dystrophy. The disease gradually weakens the skeletal muscles in the arms, legs and trunk. Eventually the heart and breathing muscles are also affected. Although survival is rare beyond the early 30s, Bolton is optimistic about his future.
For the past 21 years, he has taken the punches of losing different motor functions. He has learned to adapt to the demands of this disease, and he credits his parents with teaching him to be a fighter.
“As it progresses, you just take one step at a time,” he said. “That’s really all you can do. I’m not going to give up.”
Rita Frankenberry, 222-5102, rita.frankenberry@pilotonline.com
