Discover how the National CMV Foundation drives progress through research advocacy, legislation, and community partnerships
The Massachusetts CMV Coalition is moving forward on important legislation to expand congenital cytomegalovirus (cCMV) awareness and newborn screening — a critical step toward earlier diagnosis, better follow-up, and improved outcomes for infants at risk. State lawmakers have filed companion bills in the Senate and House that would direct the Department of Public Health to add cCMV to newborn screening processes and strengthen prenatal education about the virus.
The proposal has been studied by state health analysts and has strong backing from clinicians, researchers, and families who say universal screening and better education would catch infections sooner and connect babies to timely hearing and developmental monitoring.
Local researchers and advocacy groups are actively working with legislators to refine the bills and plan for implementation — re-filing and coalition-building are already underway as experts prepare testimony and briefings for the Legislature.
We’re proud to support these efforts in Massachusetts. If you’re a parent, clinician, or concerned resident, now is a great time to learn more, share your story with lawmakers, and urge support for newborn screening and prenatal education so every child has the best chance to thrive.
Learn how a group of CMV moms from Minnesota partnered with healthcare professionals and law makers to pass the first legislation for universal CMV screening in the country.
In partnership with Senator Richard Blumenthal (D-CT), the National CMV Foundation successfully lobbyied to have congenital CMV included in the Congressionally Directed Medical Research Programs’ Peer Reviewed Medical Research Program. This means, that congenital CMV was included on the short list of conditions that can receive research funding from the Department of Defense. Why? Because congenital CMV impacts the families who serve our country too. In 2024, over $750,000 was awarded to fund congenital CMV Research!
The National CMV Foundation has also been actively advocating for the reintroduction of the Stop CMV Act, a federal bill designed to increase awareness, research, and prevention efforts around congenital CMV. The Act seeks to strengthen public health infrastructure by supporting education for pregnant people, advancing newborn screening initiatives, and improving data collection on CMV’s long-term impacts. Get involved with our continued fight for this legislation!
Lisa Saunders was the mother of Elizabeth, who born with a severely damaged brain from congenital CMV in 1989. Although Saunders was a licensed, in-home childcare provider and a church nursery volunteer, she was unaware of CMV and her increased risk. Elizabeth died during a seizure in 2006. Saunders regularly educates the public about CMV through her congenital CMV blog and helped pass legislation in both Connecticut and New York.
Prior to 2025, the Advisory Committee on Heritable Disorders in Newborn and Children advised the Secretary of Health and Human Services about aspects of newborn and childhood screening for heritable disorders. In particular the Committee would make recommendations for the Recommended Uniform Screening Panel (RUSP). The RUSP is a list of disorders that the Secretary of the Department of Health and Human Services recommends for states to screen for as part of their universal newborn screening programs.
The National CMV Foundation submitted a nomination to the RUSP in late March 2019 and again in 2022.
Unfortunately, the ACHDNC was disbanded by the Trump Administration in the spring of 2025. Without a committee making recommendations for conditions to be included on the RUSP its future remains unclear.
Read more about the National CMV Foundation’s stance on the termination of the ACHDNC on our blog.
