Blog

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.

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

Author: Dr. Kathleen Muldoon & Dr. Megan Pesch 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.

Volunteer Spotlight: Corey Clem

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.

Perfect: A Journey of CMV, Love, and Resiliency

Author: Patty Cutshall

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. 

Parent Spotlight: Jessica Rachels

Author: Jessica Rachels 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.

Looking Back on 2020: The Year of Pirouettes and Pivots

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. 

Volunteer Spotlight: Andy Jones

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.

Recommended Uniform (Newborn) Screening Panel (RUSP) Update

Author: Dr. Megan Pesch 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.

Announcing Our 2021 President-Elect and Board of Directors

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.