National CMV Foundation

Earlier this week, exciting news was shared! The National CMV Foundation is excited to announce that bipartisan federal legislation has been introduced in the United States Senate and House to improve early detection and research for congenital Cytomegalovirus (cCMV)! ? The?Stop CMV Act?has been introduced in the US Senate by Senators Richard Blumenthal (D-CT), Chris Murphy (D-CT), and Roger Marshall (R-KS) and in the US House by Representatives Mike Lawler (R-NY) and Greg Landsman (D-OH). Specifically, the bill authorizes funding to states for hospitals and other healthcare entities caring for infants to administer congenital CMV tests and encourages state healthcare agencies to prescribe standards and procedures for the administration of these tests. The bill also creates grant programs to provide funds?to administer CMV tests, improve cCMV data collection systems, and assist in cCMV education and training. Lastly, the bill advances National Institutes of Health research for screening techniques, diagnostics, prevention, vaccines, and treatments. The Senate version of the bill is available here: https://lnkd.in/epVKksn7 The Foundation has worked with other advocates for several months to develop this important bipartisan legislation. We are excited and want to continue the momentum, and we need your help! Please contact your members of Congress asking for their support of the bill. You can visit our advocacy page to find language to help you with your request. Visit our advocacy page to learn more: https://lnkd.in/eVagSiDJ

?? Advocacy Matters! ?? Rare diseases affect 350M people worldwide—including children impacted by CMV—yet there’s still so much we can do! ??? Your voice matters in the fight for change. Learn about policy priorities and how YOU can help push for urgent rare disease legislation in Congress. ?? Let’s make an impact together! You can watch the recording of the National Organization for Rare Disorders Grassroots Advocacy Webinar here: https://ow.ly/tQVt50V6npb ?? Give now: https://ow.ly/p99M50V6npa Support our advocacy efforts to ensure all families receive the screening, education, and early intervention they need. Donate TODAY and help us #StopCMV! #CMVAwareness #RareDiseaseAdvocacy #RareDiseaseDay

??? Counting Down to #RareDiseaseDay! ??? On February 28th, we unite to raise awareness for the 300 million people worldwide—including 30 million Americans, half of them children—living with a rare disease. ?? Did you know CMV is the leading viral cause of birth defects and developmental disabilities? Each year, 1 in 200 children are born with CMV, and every hour, a child is permanently disabled by congenital CMV. ?? Here’s how you can help: ?? Donate to the National CMV Foundation to support education, advocacy, and vital resources for families and healthcare providers. Donate here TODAY: https://lnkd.in/esbhEM5y ?? #ShowYourStripes on Feb. 28th! Wear a zebra cap, shirt, or face paint, tag us, and use #ShowYourStripes to spread awareness. ?? Every voice matters. Let’s make a difference together! #StopCMV #CMVAwareness #RareDiseaseDay#ShowYourStripes

?? Big News! ?? We are incredibly proud to see our co-founders featured in The Athletic! ?? The article, “Why Raiders GM John Spytek and his wife, Kristen, are fighting for CMV awareness,” highlights their tireless efforts to raise awareness about congenital Cytomegalovirus (cCMV)—a cause that is deeply personal and critical to so many families. Their journey and advocacy are making a real difference, shedding light on an often-overlooked virus that affects thousands of newborns each year. ?? ?? Read the full story here: https://lnkd.in/ekNHCDdb Join us as we fight to #StopCMV! #CMVAwareness #NYTimes #TheAthletic #JohnSpytek

?? Did you know? Congenital cytomegalovirus (cCMV) is the most common infectious cause of lifelong disability in newborns. It can lead to serious outcomes like microcephaly, developmental delays, and hearing loss—many of which can go undetected in newborn screenings. Want to learn more? Read the full article written by our SAC Co-Chair, Dr. Mark Schleiss, to understand the global impact of cCMV and why early detection matters. ???? You can read the article here: https://ow.ly/IAVg50USjrh #StopCMV #CongenitalCMV #NewbornHealth #ChildDevelopment #CMVAwareness #EarlyDetection #PublicHealth #PediatricCare

Recently, ACI Alliance released a position statement on cCMV newborn screening stating, "emerging evidence substantiates the need for universal newborn screening for cCMV." You can read the full statement here: https://ow.ly/ERjC50UM4sq #StopCMV #Screen4CMV

Did you know that approximately 1 in 200 newborns worldwide are affected by congenital cytomegalovirus (cCMV)? ?? While most of these cases remain asymptomatic, the immune system plays a crucial role in controlling the infection. ?? In a groundbreaking study published in The Journal of Clinical Investigation, Grassmann concluded, "innate-like programming of conventional T cells may have evolved to combat congenital CMV infection." These insights could inform the development of future therapies. You can read the full article in our Newsroom: https://lnkd.in/e3gN8mhy #StopCMV #CMVAwareness #CMVResearch

Ten Years of Progress, Ten More Years of Hope!?? Thanks to incredible supporters like you, the National CMV Foundation has made significant strides in raising awareness and driving change for congenital CMV, the leading cause of birth defects in the U.S.?? ?? A CMV vaccine is now in late-stage trials. ?? Bipartisan legislation is moving forward. ?? We're closer than ever to eradicating CMV-related disabilities! But we need YOUR help to continue this progress. Consider a gift today to help shape the next decade of change. ?? Donate here now and be part of the solution! https://lnkd.in/esbhEM5y #CMVAwareness #EndCMV #GiveBack #MakingADifference #SupportFamilies #FutureOfCMV

As the year comes to a close, consider making a gift that truly matters. ? Year-end giving is not only an act of generosity—it’s an investment in the future of those affected by cCMV. Your donation can provide life-changing support to families and support advocacy efforts that make a real difference. ?? Make your gift by December 31st to take advantage of tax deductions for this year and share this post with friends and family to spread the word! Every contribution, no matter the size, helps us reach our goal. Together, we can make 2025 a year of even greater impact. ?? Donate here today and be the change! https://lnkd.in/esbhEM5y #StopCMV #YearEndGiving #SupportCMV

Check out our latest podcast episode featuring our newly elected Board President, Stephanie English! Stephanie brings over 22 years of experience planning and executing complex business operation initiatives and driving sustainable business growth for leading multi-billion dollar healthcare insurance companies. In this episode, Stephanie discusses her journey to the National CMV Foundation and shares her vision for its future, focusing on public health, awareness, and universal screening. Additionally, Stephanie highlights the importance of end-of-year giving for nonprofit organizations and the impact our generous donors will have on the Foundation's future activities. Listen to the episode here: https://ow.ly/APA850UlVcN #StopCMV #CMVAwareness