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CMV Advocacy Groups Lead the Way in Raising Condition Awareness

By August 4, 2015Cytomegalovirus ("CMV")

Cytomegalovirus (“CMV”) is the most common congenital infection in the U.S., affecting more than 30,000 newborns each year. Despite its prevalence, awareness of CMV remains low. Expecting mothers should be informed of strategies that can help reduce their risk of acquiring CMV during pregnancy.

While a handful of U.S. states have introduced legislation designed to educate pregnant women and women considering pregnancy, charitable organizations have and continue to carry the significant burden of raising CMV awareness across the U.S. and internationally.

We’ve compiled a list of the leading congenital CMV charities. Many were founded by women personally affected by the virus. We support these organizations and encourage you to do the same. If you are aware of a CMV organization that should be included on this list, please contact us.

CMV Action

CMV Action is a UK-based organization of parents and volunteers who have come together to raise public awareness of Congenital CMV. CMV Action offers advice, support, and friendship to anyone affected by Congenital CMV. They advocate for families affected by Congenital CMV and work with a number of medical professionals who have an interest in Congenital CMV.

CMV Canada

The Canadian CMV Foundation is a non-profit organization committed to eradicating Congenital CMV. The Organization seeks provides support and advocacy for the CMV community, raises awareness of the condition, and funds research with a primary focus on vaccine advancements. The Canadian CMV Foundation is best known for its annual ball hockey tournament, Le Classique.

The Congenital CMV Association of Australia

The Congenital CMV Association of Australia raises awareness of Congenital CMV, supports affected families, and helps prevent congenital CMV throughout Australia. The organization has firsthand experience with CMV and understands how difficult it can be for families afflicted by the virus.

The Congenital CMV Foundation

The Congenital CMV Foundation seeks to prevent birth defects resulting from congenital CMV infection. The Founder of the Foundation is Dr. Lenore Pereira, Ph. D., a Professor of Microbiology and Virology in the Department of Cell and Tissue Biology at the University of California San Francisco. Dr. Pereira has studied immune responses to CMV infection and molecular biology of viral glycoproteins for over 25 years.

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Maddie’s Mission

Maddie’s Mission is a local grassroots organization based in Katy, Texas. Maddie’s family had never heard about congenital CMV until she was born severely affected in January 2014. Maddie’s Mission is to educate women about CMV in general, the risk of infection during pregnancy, and three simple steps that women can take to minimize that risk.

National CMV Foundation

The National CMV Foundation works to inform and educate others on specific prevention measures to protect against the risk of CMV infection. The National CMV Foundation’s goal is to empower women to be advocates for their own health, especially during pregnancy. They encourage women to ask questions and be well informed about their health and the risk of congenital CMV infection.

The Utah CMV Council

The Utah CMV Council is a Utah-based non-profit organization dedicated to raising awareness and promoting prevention of Congenital CMV. The Utah CMV Council creates and distributes CMV awareness and prevention materials to women and organizations. The Organization participates in public health fairs, facilitate CMV training, and serves as a partner to the Utah Department of Health in implementing its CMV Public Health Initiative.

Stop CMV

Stop CMV (the CMV Action Network) seeks to prevent and eliminate congenital CMV and to improve the lives of all people affected by congenital CMV. Since 2003, Stop CMV has been fostering congenital CMV awareness via internet and public awareness campaigns. The CMV Action Network is comprised of families, friends, and medical professionals personally affected by CMV and committed to public education efforts to prevent future cases of the virus.

Brendan B. McGinnis Congenital CMV Foundation

No longer active. The Brendan B. McGinnis Congenital CMV Foundation was established in 2007 by Tracy McGinnis, whose son Brendan is severely disabled and developmentally delayed due to congenital CMV. The primary goals of the foundation were to raise public awareness about congenital CMV, to raise donations to support research for a vaccine for CMV, and to affect change in the medical community.