Mother and Child smiling while laying on a bed

Blog

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

Author: NCMVF Board of Directors

Posted: 4/25/2025
Category: Advocacy, Awareness

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.

Learn More»

COVID-19 Vaccine in Children With Disabilities and Complex Healthcare Needs

Author: Dr. Kathleen Muldoon & Dr. Megan Pesch

Posted: 1/12/2022
Category: Basic Facts, Clinical

The kid-sized Pfizer-BioNTech COVID-19 vaccine was recently authorized for children 5 to 11 years of age. 28 million children are now eligible for vaccination, including approximately 1 in 6 children with a developmental disability. [1] Recent statistics show why pediatricians and infectious disease experts at the National CMV Foundation support the vaccine for younger children, including for children with disabilities.

Learn More»

Volunteer Spotlight: Corey Clem

Posted: 10/6/2021
Category: Advocacy, Awareness, Community, Parent Perspective

Meet Corey Clem, our Community Alliance Chair from New Home, Texas. Corey is an instructor at Texas Tech University and has daughter, Ellie, born with congenital CMV.

Learn More»

Perfect: A Journey of CMV, Love, and Resiliency

Author: Patty Cutshall

Posted: 9/13/2021
Category: Advocacy, Awareness, Community, Parent Perspective

I wrote the book Perfect: A Journey of CMV, Love, and Resiliency, not only to celebrate what Brandon has done for me and others but to provide hope for those that are newly diagnosed and their caretakers and parents. I hope that this book, read aloud to your kiddo, will make you feel confident and empowered as their advocate and cheerleader.

Learn More»

Parent Spotlight: Jessica Rachels

Author: Jessica Rachels

Posted: 8/2/2021
Category: Advocacy, Awareness, Community, Parent Perspective

My name is Jessica Rachels. I am from Idaho and I am a Christian, wife, mom, homemaker, caregiver to both my Dad and daughter who have disabilities, advocate for people with disabilities, and author of Natalie Bug: My Life With Cytomegalovirus.

Learn More»

Looking Back on 2020: The Year of Pirouettes and Pivots

Posted: 1/31/2021
Category: Community, Fueling Our Mission

Last year. 2020. The year that so much changed. 2020 was an unprecedented year that caused many of us to pause suddenly. We paused to think, shift, regroup, realign, and to quite frankly, survive...As 2020 showed us, we are preparing for the best and yes, we can pivot if needed.

Learn More»

Volunteer Spotlight: Andy Jones

Posted: 1/21/2021
Category: Advocacy, Awareness, Community, Fueling Our Mission, Parent Perspective

Meet Andy Jones, our Community Alliance Chair from Alabama. Andy is a lawyer by day and when he's not working, he's advocating for CMV education in memory of his son, Ross, and enjoying nature with his wife and two daughters.

Learn More»

Recommended Uniform (Newborn) Screening Panel (RUSP) Update

Author: Dr. Megan Pesch

Posted: 1/11/2021
Category: Advocacy, Clinical, Fueling Our Mission

In the fall of 2018, the National CMV Foundation formed a sub-committee including CMV parents, researchers and public health experts, to create a nomination package. The shell of the application was submitted, however additional data was requested by the Committee. Read more to learn about our application's status.

Learn More»

Announcing Our 2021 President-Elect and Board of Directors

Posted: 1/6/2021
Category: Community, Fueling Our Mission

We are pleased to announce our Officers and Board of Directors for 2021. The Board members represent a wide range of backgrounds and experiences that reflect the diversity of our community. Our leadership team is well-positioned to implement our mission and vision.

Learn More»

Volunteer Spotlight: Shayne Gaffney

Posted: 12/10/2020
Category: Advocacy, Awareness, Community, Parent Perspective

Meet Shayne Gaffney, our Community Alliance Chair from New Hampshire. Shayne runs GC Coaching and is a cycling coach, and when he's not working, he's advocating for CMV screening in New England and hosting several National CMV podcasts! Shayne is father to two young children, his daughter born with congenital CMV.

Learn More»

Together We Stand, United We March On

Posted: 8/28/2020
Category: Advocacy, Community

We are so proud of what we've collectively built over the years, and we want to continue to strengthen and expand this work. As the African Proverb states, "If you want to go quickly, go alone. If you want to go far, go together."

Learn More»