National CMV Foundation

National CMV Foundation A non-profit organization dedicated to preventing pregnancy loss, childhood death, and disability due to congenital Cytomegalovirus (cCMV). Inform. Engage.

Advocate. To raise awareness and promote education to women and families about the risks and prevention of congenital CMV. To form human connections with those affected by cCMV by linking users with the right resources to help them navigate through the psychosocial, emotional and financial challenges associated with each resulting diagnosis. To increase community involvement through various patien

t/family support programs and events, ultimately raising funds for vaccination and anti-viral medication research, and potential financial support for families requiring additional therapies and/or equipment.

June is almost here, and that means it’s time to shine an even brighter light on congenital CMV awareness 🧡Congenital CM...
05/28/2026

June is almost here, and that means it’s time to shine an even brighter light on congenital CMV awareness 🧡

Congenital CMV is the most common congenital infection, yet most people have never heard of it until it impacts their family. Throughout June, we’ll be sharing educational resources, personal stories, advocacy efforts, fundraising events, webinars, and ways YOU can help spread awareness.

Awareness leads to education.
Education leads to prevention.
And prevention has the power to change lives.

Thank you for being here, learning with us, and helping us amplify the voices of families affected by congenital CMV. Stay tuned all month long for ways to get involved and make an impact.

05/27/2026

Run with purpose at the 2026 Philadelphia Marathon Weekend!

Join Team CMV and help us raise awareness for congenital CMV — the most common congenital infection and a leading cause of childhood hearing loss and developmental disabilities. Every mile and every dollar raised helps support education, advocacy, research, screening, and family support for those impacted by cCMV.

✨ Race Weekend: October 2-4, 2026
✨ Events include 10mi and Marathon
✨ Fundraising minimums:
• 10mi — $750
• Full Marathon — $1,500

Whether you’re running in honor of a child impacted by CMV, for awareness, or to make a difference — we would love to have you on Team CMV.

📩 Interested in joining us? Email [email protected]

When Caroline was just one week old, her family learned she had congenital CMV after she failed her newborn hearing scre...
05/26/2026

When Caroline was just one week old, her family learned she had congenital CMV after she failed her newborn hearing screening and had abnormalities on a brain ultrasound. Before her diagnosis, they had never heard of CMV — despite it being the most common congenital infection in the United States.

Since then, Caroline’s journey has included hearing loss, seizures, cerebral palsy, developmental delays, and complex medical needs. But above all else, Caroline is joyful, determined, expressive, and deeply loved.

They share her story because awareness matters. So many families are never educated about CMV during pregnancy, and early diagnosis and intervention can make a huge difference.

Caroline’s family hopes her story helps even one person learn about congenital CMV and the importance of prevention, screening, and advocacy. 🧡

05/23/2026

Part 2 - NIH Director Bhattacharya responds to .jerrymoran at the NIH Senate Appropriations committee, eluding to the concluded NY State screening program. We need more funding and active programs to the most common non-genetic cause of hearing loss, and developmental disabilities!

05/23/2026

Part 1 - This week Senator Jerry Moran (R-KS) demanded answers from the NIH Director about at the NIH Senate Appropriations committee. Thank you .jerrymoran for bringing awareness to the most common infectious cause of birth defects on a national scale!

05/22/2026

Run with purpose at the 2026 Philadelphia Marathon Weekend!

Join Team CMV and help raise awareness for congenital CMV while making every mile matter. Whether you’re running the 8K, half marathon, or full marathon, your support helps us continue advocating for education, prevention, and research for the most common congenital infection.

✨ Race weekend: November 20–22, 2026
✨ Fundraising minimums:
• 8K – $500
• Half Marathon – $1,500
• Full Marathon – $3,500

When you run for Team CMV, you’re running for babies, children, and families impacted by congenital CMV every single day. 🧡

Ready to make an impact? Sign up today and help us spread awareness one mile at a time.

https://www.philadelphiamarathon.com/

05/20/2026

Let’s go viral during June, which is CMV awareness month. Share your CMV story on our social media accounts. We are looking for Faces of CMV, those wanting to tell their story, and helping us with relatable post that will continue to spread awareness and education!

docs.google.com/forms/d/e/1FAIpQLSe1wdY1NfmS5CdvlpglaGsiRdzOb4qZeAJWWJm9AYMyiQR-eA/viewform?blm_aid=30721


When Clarissa’s son Walter was born, there were concerns during pregnancy and symptoms at birth, but congenital CMV was ...
05/19/2026

When Clarissa’s son Walter was born, there were concerns during pregnancy and symptoms at birth, but congenital CMV was never discussed, and Walter passed his newborn hearing screening.

For months, concerns about his development were met with a “wait and see” approach. It wasn’t until Walter was 14 months old, after an MRI and specialist appointments, that his family finally received answers: congenital CMV.

Now, Clarissa and her family are navigating life with Walter’s diagnosis and ensuring he receives the care and support he needs to thrive.

Stories like Walter’s are why CMV awareness, education, and prenatal/newborn screening matter so deeply.

“Please tell anyone you know that is pregnant, wanting to be pregnant, or even of childbearing age about CMV and how to prevent it. Knowledge is power.” – Clarissa 💚

05/18/2026

“I try not to let it haunt me.”

Sara Holcomb’s son August lost his hearing due to congenital CMV (cCMV) — a virus more common than Down syndrome or spina bifida, yet one most parents have never heard of.

If diagnosed early, treatment can often prevent hearing loss.

It’s why Sara is now advocating for Massachusetts to require universal newborn cCMV screening — so families have access to earlier diagnosis, earlier intervention, and a chance at different outcomes.

The bill is up for a vote this summer.

🔗If you live in Massachusetts, the VoterVoice link in bio will generate a note directly to your local representative.

1 click.
10 seconds.
Potentially life-changing for another child.

🎙️Sara Holcomb, SVP at Criteo and mother of two, on The Mothers.

Meet Emily 🧡Emily was diagnosed with congenital CMV (cCMV) at just 5 days old after what her family believed was a perfe...
05/11/2026

Meet Emily 🧡

Emily was diagnosed with congenital CMV (cCMV) at just 5 days old after what her family believed was a perfectly healthy pregnancy. Today, Emily is deafblind with cochlear implants and also lives with cerebral palsy and epilepsy.

Her mom, Ryan, shares that while life with a medically complex child can be incredibly hard, Emily has taught everyone around her so much about love, perseverance, and perspective.

“Life took a left turn we didn’t expect when we received her diagnosis, but she has taught us and everyone around her so much about love, perseverance and perspective.”

Families affected by cCMV often navigate therapies, appointments, equipment, and countless logistics behind the scenes — but at the heart of it all is a child who deserves to be seen, included, celebrated, and loved just like any other child.

Ryan hopes Emily’s story encourages more people to learn about CMV and how to reduce the risk during pregnancy because awareness can make a difference.

Please help us spread awareness by sharing Emily’s story

Mother’s Day can hold so many emotions within the CMV community.For some, it’s filled with joy and celebration.For other...
05/10/2026

Mother’s Day can hold so many emotions within the CMV community.

For some, it’s filled with joy and celebration.
For others, it carries grief, guilt, exhaustion, worry, or longing.
And for many, it’s all of those things at once.

Today, we honor every mother and caregiver impacted by congenital CMV — the ones navigating appointments and therapies, the ones advocating tirelessly, the ones raising awareness so other families don’t walk this path unaware, and the ones carrying children in their hearts today.

Your love is powerful.
Your advocacy matters.
And your strength does not go unnoticed. 🤍

From all of us at the National CMV Foundation, Happy Mother’s Day.

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