Blog

Rare Disease Day

Author: Emily Walsh Rare Disease Day was first established by the health organization EURORDIS in 2008 to bring greater awareness to conditions that typically escape widespread notice. Rare diseases are also known as orphan diseases, as they typically impact only a fraction of the population. It may not seem like a lot, but currently one in ten Americans are living with a rare disease. Congenital CMV is considered a "rare disease".

A Mother's Fight: Maine's CDC CMV Recommendations

Author: Laura Sweet LD 87 was referred to the Legislature’s Joint Standing Committee on Health and Human Services and a public hearing and work session took place in February 2017. The whole process moved much more quickly than I anticipated. We gathered other families and supportive members of Jane’s medical and early intervention teams to testify alongside us. The Committee voted not to pass the bill, but with the understanding that the Maine Center for Disease Control and Prevention (CDC-P) would convene a multi-disciplinary work group to review issues surrounding congenital CMV and make recommendations to the Committee within a year.

3 Ways to Support National CMV on #GivingTuesday

#GivingTuesday is a global giving movement that has been built by individuals, families, organizations, businesses, and communities in all 50 states and in countries around the world. This year, #GivingTuesday falls on November 28. Join us by making a charitable gift as we work to #stopCMV.

Happy Thanksgiving!

Wishing you a happy Thanksgiving and holiday season!

To our parents, advocates, ambassadors, donors, and experts, thank you for your continued support in raising awareness and educating others about congenital CMV.

CMV awareness is dangerously low as compared to other congenital diseases

Even though congenital CMV is the leading viral cause of congenital disabilities and the leading non-genetic cause of childhood hearing loss, most adults have never heard of it. 

The CDC Releases New CMV Materials

The Centers for Disease Control and Prevention (CDC) released two new resources for health care professionals about congenital CMV in June 2017, National CMV Awareness Month. The information sheets, produced and published by the National Center for Immunization and Respiratory Diseases (NCIRD), provide much needed information for healthcare providers who work with two distinct populations affected by congenital CMV—pregnant women and their newborns. 

​Key Observations from the 2017 International CMV Conference

Approximately 300 of the world’s leading experts in CMV-related research came together in the Netherlands on April 30th for the 6th International CMV Conference (16th International CMV/betaherpesvirus Workshop). This event aims to connect basic science and clinical expertise research to prevent and cure CMV diseases. Several trusted advisors to the National CMV Foundation and members of our Research Priorities Committee attended and presented on current studies and recent findings. 

Meet the Founders: Kristen Hutchinson Spytek

Kristen is the current President of the National CMV Foundation. Read as she recounts her personal journey along with pertinent CMV information from her guest blog on MotherToBaby.org: "CMV. The Most Common Viral Infection Affecting Newborns That You've Never Heard About".

​National CMV Foundation Sponsors $45,000 CMV Research Award

The National CMV Foundation is excited to announce that it made its first research award in May 2017. Through the Pediatric Infectious Disease Society (PIDS), the foundation awarded a two-year, $45,000 fellowship award to Frances Saccoccio, MD, PhD. Dr. Saccoccio is a 2nd year pediatric infectious disease fellow at Duke University. She is a graduate of Virginia Commonwealth University School of Medicines’ combined MD/PhD Program and her dissertation and other research work has focused on congenital CMV vaccines. 

​Get Involved: 6 Ways to Support National CMV This June

June is National CMV Awareness Month. National CMV Awareness Month is a time to educate your community about congenital CMV. Spreading CMV awareness in medical practices, therapy centers, daycares and schools is a great way to celebrate June and promote prevention practices so we may eliminate congenital CMV for the next generation.