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People News
Inaugural Fundraiser to Be Held to Stop Rare Disease
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Thursday, September 2, 2010
By Laura Braddick
The luminous glow of a firefly in the dark sky can be seen as a symbol of hope that blinks its way through the night.
For those affected by mitochondrial diseases, however, the firefly represents even more.
Mitochondria, the energy factories of cells, help fireflies light up and that same cell organ helps produce energy in human cells, which fuel the body.
In people with mitochondrial diseases, however, these cellular power plants are dysfunctional or limited, causing varied physical and mental effects from muscle weakness and poor growth to learning disabilities and neurological problems.
To raise awareness of this rare disorder, which can affect newborns, children or adults, a group of Buckhead residents has organized a fundraiser for the Dunwoody-based Foundation for Mitochondrial Medicine. The co-chairs chose a firefly as the icon for the event.
“What makes this organization different from other [mitochondrial groups] is that we’re trying to talk about the hope,” said Buckhead resident Margaret Martin, a committee member whose daughter Grace, 6, has the disorder. “This can be a debilitating disease, but the exciting thing is they are really close to finding a treatment.”
The inaugural Hope Flies: Catch the Cure will be held Sept. 11 on the open 18th floor of Terminus 200 in Buckhead.
The event will feature the Yacht Rock Review cover band as well as a silent auction all along an unobstructed skyline view of the city.
Proceeds will go to help fund clinical trials for treatments and the cause of the disorder being researched by Dr. John Shoffner, a Dunwoody-based doctor and expert on mitochondrial diseases.
“In essence this event will sort of re-launch the foundation,” Ms. Martin said of the organization, which was founded in 2005, but has recently redirected its mission to be more proactive in fundraising for research.
Ms. Martin’s close friend Lane Courts helped pull the board together and help them get in a place to receive donations.
“It’s been just over a year since this all started,” said Ms. Courts, who is co-chairing the event with her husband Richard. “There are lots of wonderful people who have donated their time and are passionate about it.”
Even though the condition affects one in 3,000 people and has no cure, some might be surprised at how many people in the community are affected, said Ms. Courts, noting Atlanta Braves General Manager Frank Wren is on the foundation’s board.
“This just says so much about the Buckhead community that all these people have donated their time to make this new project work,” said Ms. Courts.
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