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News from Mass Live.com The Repubblican
May 2, 2007
Fund-raiser
targets disease
Wednesday, May 02, 2007
By PAMELA H. METAXASpmetaxas@repub.com
CHICOPEE - A Chicopee firefighter whose son suffers from a
debilitating disease is kicking off the fourth annual United
Mitochondrial Disease Foundation fund-raiser to raise money for
research.
Dan Genie, his wife, Rebecca, and sons, Cameron, 8 and Aaron, 4, of
the Indian Orchard section of Springfield, are in the planning
stages of the fund-raiser scheduled for Aug. 26 from noon to 5 p.m.
at the Moose Family Center on Fuller Road.
Cameron, who attends the Alfred G. Zanetti Montessori School in
Springfield, suffers from a rare disorder called PDHD, a
mitochondrial disease.
The disease affects his Krebs cycle, or the way his body utilizes
energy, causing him, at times, to be bedridden.
"He was just sick for a week and stayed in bed the whole time. He
was very sensitive to loud noises and very lethargic," Genie said.
Over the past three years, with the help of donations including from
Chicopee Firefighters Local 1710 and sponsors, the event has raised
$30,000 for research into the disease.
This disease stems from the body's inability to turn food into
energy and can show up in a variety of ways such as a weak heart,
failing kidneys and respiratory complications.
This year, again, the Moose Family Lodge is donating use of the
grounds including a pavilion and the facility.
Tickets at $10 each may be purchased now by calling Genie at (413)
330-7945.
Children under 5 will be admitted free.
We will again have a picnic, live entertainment, a DJ, clowns,
bouncy houses and, new this year, a martial arts demonstration from
the Academy of Martial Arts in East Longmeadow. We are still in the
planning stages but there will be many activities for adults and
children," Genie said.
He is hoping for good weather this year to increase participation
since last year's inclement weather kept the crowds down. The event
will be held rain or shine.
There will be hamburgers, hot dogs, potato and macaroni salad, corn,
soda and a full cash bar.
"We are now looking for sponsors, both businesses and individuals,"
Genie said.
For $75, a business or corporation can have its name and logo on
T-shirts which will be sold for $10 each.
Genie, a 12-year veteran of the Chicopee Fire Department, said
Cameron first exhibited symptoms when he was about a year old. More
than 4,000 children born in the United States annually will develop
a mitochondrial disease by age 10, although the numbers of those
affected may be higher because the diseases are not always properly
diagnosed.
The mission of the United Mitochondrial Disease Foundation is to
promote research and education for the diagnosis, treatment and cure
of mitochondrial disorders and to provide support to affected
families.
The foundation was founded in 1996 by a merger of several smaller
mitochondrial disease foundations. Parents who had lost their
children or those who had lost loved ones to the disease originally
established the smaller foundations.
http://www.masslive.com/news/republican/index.ssf?/base/news-2/117800573716930.xml&coll=1&thispage=1
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