Texas High School Raises Funds and Awareness of Congenital CMV
January 2010 -- A high school in east Texas has selected congenital CMV as their annual project with fundraising campaigns and events to take place during the 2009-2010 school year. Students have been inspired by CMV mother Brandi Howard (a local resident and teacher) and her daughter, Katy, born in 2006 with congenital CMV. Katy is hypotonic and profoundly deaf with cochlear implants but "she's overcome a lot of the muscle issues," says her mother. "At 4 months, they told us she would never walk or crawl and now she's a walking, jumping, bouncing 3 year old."
Huntington students have been making presentations about congenital CMV at district meetings and galvanizing support within the district and the community. "Brandi teaches with my mom, so I met Katy when she was very little," says Hannah Smith, a senior and student council vice president. "We believe our kids and parents will get involved and help since Brandi and Katy are very loved in Huntington." A 5K fun run, dubbed the "5K for Katy", is planned for the spring with a fundraising goal of $5,000 to be directed towards congenital CMV awareness. For more information on the upcoming events at Huntington High School, stay tuned to Stop CMV.
CMV Mother Starts Deaf-Blind School in California
December 2009 -- A CMV mother in Northern California is opening a special needs school to serve the deaf-blind community. The Marin School for the Deaf-Blind is the project of Jennifer Brooke, mother of three children, including Max, born in 2006 with congenital CMV. "He is too blind for a deaf school, too deaf for a blind school, and with his CP (cerebral palsy), he doesn't fit in anywhere," says Brooke. With a brick and mortar location planned within two years, the school will be dedicated to serving children that have a sensory loss, including deafness or blindness--or both, as well as other disabling conditions, such as cerebral palsy. "A place for kids that don't even fit the special needs mold," she says. "Our school systems aren't really set up for "special" special-needs kids." For more information about the Marin School for the Deaf-Blind, email to jbrooke@marindeafblind.org.
Stop CMV Day with the Arizona Diamondbacks
June 2009 -- Stop CMV and the CMV Action Network sponsored the 1st Annual Stop CMV Day at Chase Field in Phoenix, Arizona on Sunday June 14th, 2009. Chase Field is home to the Arizona Diamondbacks, who hosted the Houston Astros. CMV parents and families, along with children born affected with congenital CMV, were in attendance and fielded inquiries from the press and the public about the dangers of CMV.
"I've never had so many people ask about CMV," said Heather Key, Phoenix Chapter President and chair of the event. "That was my goal, to have everyone look at us in these shirts and say "what is that?"."...more info
Stop CMV Founder/President speaks at the CDC
November 2008 -- Stop CMV's Founder and President Janelle Greenlee spoke at the 2008 Congenital CMV Conference at the Centers for Disease Control and Prevention (CDC) in Atlanta, Georgia. The conference was the second international collaboration of scientists, clinicians, and families with the primary focus of "Public Health Action towards Awareness, Prevention and Treatment".
Stop CMV Founder and President, Janelle Greenlee, spoke about the need for families and communities to mobilize against congenital CMV. "We have all found ourselves in this unique situation, this poignant moment where we have the opportunity to find what is genuinely inside of us and give of ourselves", said Greenlee. "I strongly believe that the way to work through the grief and emotions that many of us will carry with us for our entire lives, sometimes, that way to succeed in tragedy is to take action and to give of ourselves, our time, and our talents."
Other topics addressed at the conference included public health issues and initiatives, raising awareness of congenital CMV, establishing testing and screening standards, advancing treatment options, proposing preventative guidelines, and promoting vaccine initiatives.
2010 International Congenital CMV Conference
The next International Congenital CMV Conference is scheduled for September 23-24, 2010 in Paris, France.
More information will be posted as it becomes available.
Kissing Evolved to Spread Germs, Not Feelings
November 2009 (Popular Science) -- It looks like your kindergarten gut reaction to kissing might have been correct after all: it really is sick. Or, more specifically, the practice is designed to spread sickness. British scientists say the human habit of kissing evolved for less-than-romantic reasons, but one that is nonetheless important to a healthy reproductive relationship: to spread germs. Cytomegalovirus, which lives in human saliva, is generally innocuous, but when introduced during a pregnancy it can be extremely dangerous, killing unborn babies or causing birth defects like deafness or cerebral palsy... more info
Viral load may not predict hearing loss in children with congenital CMV
July 2009 (The Pediatric Infectious Disease Journal) -- Cytomegalovirus DNA levels were no different among children with hearing deficits and those without, suggesting that viral burden had poor predictive value as a marker for hearing loss. "We could not confirm the association between systemic virus burden during early infancy and sensorineural hearing loss [SNHL] in children with asymptomatic congenital CMV infection that was observed in our previous study," the researchers wrote... more info
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January 25, 2010
Stop CMV Launches New Parent Advisory Panel...more
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December 22, 2009
Stop CMV and The CMV Action Network Granted 501 (c)(3) Status...more
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October 30, 2009
Stop CMV Raises Awareness of Congenital CMV--the Most Common, Least Known Birth Defect...more
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