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Congenital CMV Community News

Massachusetts Supporter Hosts Bicycle Poker Run Event

June 1, 2010 - "Cycle For a Cause", a bicycle poker run event, will be held on Saturday June 12th in Palmer, Massachusetts. Registration for the event begins at 9:00am with the last bicycle leaving by 10:30am. Participants will bike to different locations with live music, drinks, and the best poker hand and raffle winners announced at the final location. The grand prize is $200 to the best poker hand! All proceeds from the event will go to Stop CMV... more info

Utah Girl Hosts Lemonade Stand to Raise Awareness of Congenital CMV

June 1, 2010 - An Orem, Utah girl is hosting a lemonade stand to raise awareness of congenital CMV (cytomegalovirus), a common virus that causes birth defects. The Lemonade Stand to Stop CMV will be held on Saturday June 5th from 3:00pm to 6:00pm at the LDS church building at 688 East 800 North in Orem. All proceeds from the event will go to Stop CMV... more info, and event flyer

Stop CMV Day at Adventureland in NY to Raise Awareness of CMV

May 5, 2010 - New York parents will be hosting Stop CMV Day at Adventureland Amusement Park in Farmingdale, New York to raise awareness of congenital CMV (cytomegalovirus). The event takes place Saturday June 5th between 1:00pm and 4:00pm. Admission to the event is $20, which includes all rides and attractions, as well as a $3.50 donation to Stop CMV. CMV families, children born with congenital CMV, and Stop CMV supporters will be in attendance and available for interviews with the press... more info

Second Annual Stop CMV Day at Chase Field in Phoenix, Arizona

June 20, Phoenix, Arizona - Stop CMV and The CMV Action Network will be sponsoring its 2nd Annual Stop CMV Day at Chase Field in Phoenix, Arizona on Sunday June 13, 2010 at 1:10pm. Chase Field is home to the Arizona Diamondbacks, who will host the St. Louis Cardinals on game day. CMV families, along with children born affected with congenital CMV, will be in attendance at the game and will be available for interviews with the press... CLICK HERE to order online!, more info, event flyer, and order form

CMV Mother compliling parent stories for special needs book

April 25, Raleigh, North Carolina - CMV mother and North Carolina Area Representative Lori Ewing is asking CMV parents to complete a questionaire for an upcoming book project about CMV and children with special needs.

The questions include the following:

1. Tell me your CMV story: what was your pregnancy like, what did you know about CMV before your child was born, and how did you find out your child had CMV?
2. What did doctors tell you about your child when he/she was diagnosed?
3. How is your child affected by CMV?
4. What is the best piece of advice that you have been given by a.) doctors, and b.) other CMV parents, c.) other parents? What's the worst advice?
5. What are your best and worst experiences with your child? (Not just medical experiences, also things like the first time that your child chose to hug you or smiled at you)
6. What are the positives that you have seen in having a child with CMV? I know that there aren't always positives, but we tend to look for the best - what are the things that you have noticed that give you hope that you can handle this?
7. How did you cope with the diagnosis of CMV and all of its possibilities?
8. How are you coping now? How do you get through each day?
9. What is the one piece of advice that you wish you had been given when you found out your child's diagnosis?
10. What do you want other parents to know about CMV?
11. What do you want other parents to know about raising a child with a disability?
12. How do you handle the reactions of other people to your child/children?
13. What brings out the strongest emotions in you as a parent? For example, what situation makes you the angriest? What makes you happy? What makes you sad?
14. How has having a child with CMV changed you?
15. If you have other children, how has having a child with CMV changed the way you parent your other children?
16. What have you learned from your child?
17. What's one thing that you wish you could tell people to let them know what you need in order to cope? Do you need people to leave you alone and not ask? Do you need people to ask? Do you just need someone to be angry with you because of the situation?
18. What else do you want me to know about your child and your family?
19. Any major experiences that were a turning point for you in how you handle things?

For more information about the book or to submit your questionaire, email to lori.ewing@hotmail.com.

Mother hosts charity yard sale to raise awareness of CMV

May 1, Baldwyn, Mississippi - A local mother is hosting a charity yard sale to raise funds for congenital CMV (cytomegalovirus) awareness. Miranda Thomas, a Baldwyn resident, gave birth to her son Dalen in 2009 who was born infected with congenital CMV, a common virus that causes birth defects. Now almost one year old, he is developmentally delayed and has hearing impairment. Thomas contracted the virus while pregnant and has been working locally to raise awareness of congenital CMV... more info

Challenge:42 Soccer Match to Benefit CMV Association in the UK

April 30th-May 2nd, in Burghfield, Reading, UK. "Challenge:42 has been set up to help raise money for the CMV Association, a charitable organization that seeks to offer advice and support to families affected by CMV and for support professions in search of more information. mammoth charity football match has been organised for May Day Bank Holiday 2010, where the CMV Royals will do battle against the CMV Hammers for what is hoped will be a Guiness World Record attempt at the longest ever football match, currently set at 36 hours. Challenge:42 hopes to smash this record by playing for at least 42 hours"... more info

2010 International Congenital CMV Conference

Paris Descartes University
Paris, France
September 23-25, 2010

The international conference on congenital cytomegalovirus infection is held every two years and brings together the world experts in this field and is relevant to scientists, clinical virologists, obstetricians and pediatricians.

The 3rd Conference will be held at Paris Descartes University in the heart of the latin quarter of Paris. It follows on two successful editions held in Orvieto, Italy in 2006 and in Atlanta, USA in 2008. All aspects from basic science to pre and postnatal clinical management of this condition will be convered. The third edition will coincide with the reporting of several therapeutic clinical trials and therefore the theme of the 2010 conference will be: "Congenital CMV infection, a preventable and curable disease"... more info

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.

CMV Awareness Wristbands