4/29/2009 12:01:00 AM
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If you go
• What: 2009 Congenital CMV Awareness Walk-n-Rollathon
• Where: Shorty Howell Park in Duluth
• When: May 16 at
10 a.m. Registration begins at 9 a.m.
Walk to raise awareness, funds to help fight virus
DULUTH - To help raise awareness about a virus
that disables a child every hour in the United States
, a couple of Centers for Disease Control and
Prevention researchers will host a Walk-n-Rollathon
on May 16 at Shorty Howell Park.
Congenital cyto-megalovirus - or cCMV - can cause
hearing and vision loss, mental disabilities, seizures
and even death. About 30,000 babies are born with t
he virus each year. Several factors determine whether,
or when, symptoms or disabilities arise.
"My supervisor, Michael Cannon, and I were approached
at the International Congenital CMV Conference held
at the CDC by the Brendan B. McGinnis Congenital
CMV Foundation and asked to host a walk here in
Atlanta," CDC researcher Jen Stowell said. "We work on
CMV prevention and wanted to volunteer for this event
because we think it is an important cause."
Stowell said the event is not sponsored by the CDC.
Participants will walk the 1.25-mile trail, which will bear
signs serving as billboards with information about the
virus. Before the walk begins, researchers will share
their knowledge and a Gwinnett family will give its first-
hand account of how cCMV has affected them.
Rob and Shanna Boot's 8-year-old son, Jakob, was
diagnosed with the virus two months after he was born.
He has lost all hearing, didn't sit up until he was 16 months
and couldn't walk until he was 3 years old. Shanna said they
will be on pins and needles until Jakob is about 18, by which
time they should know if he will lose his vision.
Despite all that, Shanna feels lucky.
"Intellectually we don't know exactly how he'll be. We think
he'll have the ability to work in the world and survive,"
Shanna said. "But we're fortunate. I've seen some children
who are way more severe."
Stowell said the purpose of the "rollathon" is two-fold. The
first objective is to bring attention to children affected by the
virus, many of whom are wheelchair bound.
"The second reason is for strollers," she said. "We want this
to be a family event with parents involved - especially
mothers of child-bearing age as they are the 'at risk' population."
The McGinnis cCMV Foundation is asking for donations and
pledges to help fund vaccine research, but the event itself is free.
"One of our main goals is awareness, so the bigger the turnout,
the better," Stowell said.
Boot hopes that sharing her family's story can help someone else.
"When I was pregnant with Jakob, I had no idea what it was,"
she said. "They tell you there are scary things out there ...
my biggest hope is we can help let people know what it is
and what it can do."