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Blog

A Step Backward: HRSA’s Elimination of the ACHDNC Threatens Progress on Newborn Screening

Author: NCMVF Board of Directors The National CMV Foundation is deeply concerned by HRSA’s recent decision to dissolve the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC)—a cornerstone of equitable, evidence-based newborn screening for over 20 years. Without this federal oversight, there's now no national process to evaluate and recommend new conditions—including congenital cytomegalovirus (CMV), the most common infectious cause of birth defects and developmental disabilities in the U.S.

Volunteer Spotlight: Taylor Gerding

Meet Taylor Gerding, our CMV Community Alliance Chair from Indiana, a pediatric speech-language pathologist and mom to Ava.

Q&A with Mama Hu Hears

We had a chance to chat with Michelle Hu. Aud, Pediatric Audiologist. Michelle has turned her love for all things hearing and personal experience with hearing loss into an online presence for educating parents and professionals - Mama Hu Hears. Michelle shares her clinical perspective and experience with congenital CMV related hearing loss.

Early Career Research Award Update: Dr. Maria Talavera-Barber

Dr. Talavera-Barber, Assistant Professor of Pediatrics at the University of South Dakota Sanford School of Medicine, was a 2019 recipient of a National CMV Foundation Early Career Research Award. In this blog post, she discusses the impact of her research on CMV antibody levels in pregnant women and newborns.

Update: cCMV Nomination for the Recommended Uniform Screening Panel (RUSP)

The most recent update about our nomination for congenital CMV (cCMV) for inclusion on the Recommended Uniform Screening Panel (RUSP) by the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) by Megan Pesch, MD, MS, FAAP, President-Elect National CMV Foundation. 

Volunteer Spotlight: Brandi Hurtubise

Meet Brandi Hurtubise, our Community Chair Alliance from Buffalo, NY. Brandi's daughter Samantha was born with cCMV. 

CMV Vaccine Trial Testimonial

Hear directly from Meghan, a CMV advocate participating in the Phase 3 Moderna CMVictory trial, as she discusses her why and shares basic facts about enrollment.

Newborn Screening and Congenital CMV

Author: Patrick Fleming, M.D. Candidate Early detection of congenital CMV infection in newborns is essential to providing the best possible care. Unfortunately, cCMV is not yet included in universal newborn screening (NBS) programs in the United States. Read more to learn about the history of NBS as it relates to congenital CMV.

Volunteer Spotlight: Alicia Busso

Meet Alicia Busso, our Community Alliance Chair from Missouri. Alicia is an emergency room physician and mother to two daughters, her oldest born with congenital CMV.
 

Late-Onset Hearing Loss Awareness

Author: Diana Hanson, MS CCC-A Late Onset Hearing Loss (LOHL) is hearing loss that follows a passed newborn hearing screening up until age 5-6 years. LOHL Awareness Week was established in May 2021 to shine a spotlight on a population of young children who are often undiagnosed until later in childhood.

Volunteer Spotlight: Shelly Zappas

Meet Shelly Zappas, our Community Alliance Chair from Los Angeles, California. Shelly is a family nurse practitioner and currently, a professor and the program director for the MSN-FNP program at the University of Southern California. She has two children, one born with congenital CMV.