Our advocacy programs are primarily focused around congenital cytomegalovirus (CMV) prevention education and newborn screening.
We deliver education about congenital CMV to women of childbearing age through digital platforms, strategic partnerships, public health initiatives, and grassroots advocacy efforts.
We advocate for the screening of newborns so we may properly evaluate and identify these babies to enroll them in the proper treatment as standard of care. Our definition of treatment includes options such as anti-viral therapy, early intervention services, ongoing monitoring protocols, and/or physical, occupational, speech therapy and modalities as appropriate.
Learn more about our activities and impact below.
CMV Community Alliance
OBJECTIVE: Establish an ambassador program for top CMV advocates by 2020.
In its sixth year! In keeping with our grassroots history, the National CMV Foundation supports volunteer project groups of our organization, called CMV Community Alliances, in regions nationwide. Community Alliances are made up of individuals passionate about eliminating congenital CMV that are willing to provide support to others within their local community, increase awareness of congenital CMV per our three target audiences, and raise critical funds to support outreach efforts and find meaningful treatments so we may ultimately STOP CMV from causing devastating consequences for babies.
The National CMV Foundation invites its volunteer chairs to attend virtual and live leadership training events throughout the year, which allows for an opportunity for them to interface directly with the world’s leading scientific experts. These trainings will provide necessary skills needed to strengthen the congenital CMV elevator pitch, host special events in their communities, and empower them to advocate for greater education and research dollars.
Meet our 2024 Chairs!
- Alabama: Stacey Gray-Smith
- California: Shelly Zappas
- Colorado: Katelyn Gast
- Florida: Allyssa Thompson, Cara Gluck
- Indiana: Taylor Gerding
- Kentucky: Sarah Streeval
- Massachusetts: Heather Kavanaugh, Sara Holcomb
- Maine: Kelsi Gagne
- Michigan: Haley Childs, Alex Decker, Samantha Nikirk
- Minnesota: Kathleen Smith
- Missouri: Alicia Busso
- Montana: Patty Cutshall-Bailey
- North Carolina: Tierney Huff
- New Jersey: Michelle Longo
- New York: Brandi Hurtubise, Kara Russell
- Ohio: Miranda Diaz, Maggie Kettler
- Oklahoma: Ellie Pryor
- Pennsylvania: Taylor Hayden
- South Dakota: Stephanie East
- Utah: Gavin Murray
- Virgina: Lisa Eickel, Megan Becker
- Wisconsin: Pamela Jinsky
- West Virginia: Shania Hunt
Questions or would you like to connect with the Community Alliance Chair in your region? Email alliance@nationalcmv.org for more info.
Education & Outreach
OBJECTIVE: Continue commitment to increase aided and unaided awareness of Congenital CMV to 20% in select local markets by 2020, and provide public health outreach education to serve the general public, childcare providers, and medical professionals through greater grassroots engagement.
Congenital CMV is the leading viral cause of birth defects and disabilities, and the leading cause of non-genetic childhood hearing loss, and 91% of women DON’T know about it. The awareness rate of congenital cytomegalovirus (CMV) as compared to other congenital diseases and infections is alarmingly low, and yet approximately 0.7% or 30,000 newborns are born with congenital CMV in the United States each year.
Several activities geared towards improving this awareness rate include creating fresh and useful content to live on our online properties – e.g. website and social media channels; launching campaigns for general promotion via our eNews, digital advertising, public relations, speaker’s bureau, and event series; and developing educational materials, training modules, webinars, and podcasts, to reach our audiences where they are.
We are focused on educating three target audiences about prevention strategies to mitigate the risk of CMV transmission before and during pregnancy –
- Women of childbearing age
- Childcare providers
- Healthcare providers
We rely on the above activities and our eager volunteers to help us distribute and disseminate these materials to the general public, policymakers, professional institutions, and medical associations.
Legislative Support
OBJECTIVE: Steadily increase the CMV network’s influence with policymakers to achieve established federal and state policy priorities by executing successful strategies to develop productive and meaningful relationships. Increase state priority-driven meetings by 5% each year.
In 2013, Utah became the first state in the nation to mandate hearing-directed cytomegalovirus (CMV) testing for all infants who fail the newborn hearing screening test(s) before 21 days of life. Early on, there were challenges in implementation, but due to the state department’s ability to find effective and cohesive solutions, 95% of all eligible newborns are now being screened for CMV.
Since then, nineteen states have passed legislation requiring CMV education, newborn screening, or both, thanks to the tireless efforts of our parents and their communities! Some states have seen activity around CMV awareness, screening, and education in their health departments in tandem or without legislation.
While every state has different policies, stakeholders, budgets, and interests, we have managed to establish a baseline as well as a solid framework from which to improve upon. This program is meant to support others beginning, and perhaps in the middle of these efforts within their respective states. Some activities include:
- Connecting parents and others within their state or region as they explore options and create a game plan.
- Helping to identify key stakeholders necessary for CMV legislative action.
- Describing the process for proposing, developing, and implementing legislation through our constantly evolving advocacy toolkit.
- Sharing successes, challenges, and key learnings as a means to overcome existing obstacles and establish new relationships.
- Providing action planning templates to properly allow the state’s level of readiness for legislation or policy changes.
Learn more about advocacy efforts to date here!
Care to Talk
Interested in connecting with other CMV families for support? Care to Talk is a recurring, online support group for families with a cCMV diagnosis. Join us as we discuss life before, during, and beyond congenital CMV. The next Care to Talk Session will be held on June 20th at 8:00pm EST. You can register and learn more here.
Care to Talk is moderated by National CMV team members and volunteers. This forum is an opportunity meet others within the community, and provide peer to peer support. Follow our social media to learn about upcoming events!
Public Health Awareness Mini Grant Awards
OBJECTIVE: Establish a public health awareness mini grant program for up to 10 states, regions, or consortiums by 2020, to further promote education to medical professionals and the general public through greater, local grassroots engagement, to increase awareness of congenital CMV.
The target population should include some direct outreach to pregnant women, influencers of pregnant women, and/or those potentially affected by congenital CMV and their providers.
Meet our 2019 and 2018 grantees and learn more about their specific projects at the links below!
2019
Expecting Health
Flushing Hospital
Lurie Children's Hospital
Michigan CMV Project
2018
The Central Jersey Health Consortium
The EAR Foundation of Arizona
The Ohio CMV Advocacy Project