Tuesday, May 5, 2009

THE ARTICLE


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


By Heath Hamacher

Staff Writer


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."

2 comments:

Lisa M. Saunders said...
This comment has been removed by the author.
Lisa M. Saunders said...

Thanks for raising CMV awareness with this article. Could save some lives (too late for my girl Elizabeth who died from CMV complications in 2006). See my CMV work and meet other parents at:
http://congenitalcmv.blogspot.com/