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Our Programs

Programs & Education

Our advocacy programs are primarily focused around advocacy 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.
 
New in 2019! In keeping with our grassroots history, the National CMV Foundation is piloting volunteer project groups of our organization, called CMV Community Alliances, in five to ten locations nationwide. Community Alliances are made up of individuals affected by 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 is inviting its volunteer chairs of these pilot Community Alliances to Birmingham, Alabama for the 2019 International CMV Conference, which includes an opportunity to interface directly with the world’s leading scientific experts, as well as National CMV leadership training. This training will provide necessary skills needed to strengthen the congenital CMV elevator pitch, special events, and to empower them to advocate for greater education and research dollars.
 
If this program is a success, and we know it will be, we will continue to roll-out new Community Alliance locations nationwide in 2020 and beyond!

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 –  

  1. Women of childbearing age
  2. Childcare providers
  3. 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, sixteen states have proposed or 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 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

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. 

Our 2019 grant cycle is now closed and the Request for Applications will resume summer 2020.

Grant Title:  Raising Awareness of Congenital CMV
Selection Method: Competitive Bid
Mini-grant Period: August 15, 2020 to August 15, 2021
Mini-grant Extension: This grant has no annual renewal; grantees must reapply yearly.
Award Amount: Up to $7,500
Funding Cycle: 1 Year
Number of Awards: Up to 3
Issuing Agency: National CMV Foundation, PO Box 18322 Tampa, Florida 33679
Application Submission Date: July 17, 2020 by 5:00pm Mountain Time. Incomplete or late applications will not be accepted. Submit your application to Alyson Ward at grants@nationalcmv.org.

Grant activities during the award period are classified as either one-time events or ongoing projects. Applications may be submitted by both United States-based private or public-sector organizations, including non-profit and for-profit organizations or any unit of local, state, or federal government. 

In its second year, National CMV received a high volume of extremely interesting proposals for projects that will increase cCMV awareness in the United States. Meet our 2019 and 2018 grantees and learn more about their specific projects at the links below!

2019
Expecting Health
Flushing Hospital
Michigan CMV Project


2018 
The Central Jersey Health Consortium
The EAR Foundation of Arizona
The Ohio CMV Advocacy Project

 

The doctors knew Cameron's problem was viral, but they couldn't pinpoint the virus. Finally, after about 2 days, my placenta lab test came back and it was infected with CMV. I was so relieved that Cameron was going to survive, but I was not ready for the next bombshell. The NICU doctor told us that as a result of is brain damage, Cameron would not be able to “walk, talk or learn."
— Julie, Mother