Blog

EHDI Conference Recap

Author: Amanda Devereaux The 2020 Early Hearing Detection & Intervention (EHDI) meeting was held in Kansas City, MO, March 8-March 10th. The goal of the annual EHDI Meeting is to enhance the implementation of comprehensive state-based Early Hearing Detection and Intervention (EHDI) programs, and there were several key observations relevant to our CMV community from this year's meeting.

Volunteer Spotlight: Cara Gluck

Meet Cara Gluck. Public health professional and CMV mom from Lawton, OK. Cara's passion and perspective combine to increase CMV awareness in her home state and beyond!

Volunteer Spotlight: Amanda Devereaux

Meet Amanda Devereaux. Maternal child health nurse and CMV mom from Des Moines, Iowa. Amanda's passion and drive are helping to make great strides in her community and beyond! 

Volunteer Spotlight: Laura Sweet

Meet Laura Sweet. Laura is a CMV mom and member of the Maine CMV workgroup. When she's not spending time with her family, husband Joe and their two children, Henry and Jane - she's training to run with Compete 4 CMV in this year's NYC Marathon. We're grateful that she took a bit of time to share a bit more about her family, as well as her work as an advocate and CMV parent.

Volunteer Spotlight: Kim Hill

Meet Kim Hill. Kim, her husband Jason and their four children make their home in Raleigh, NC. Kim is a parent educator for the North Carolina Division of Public Health and board Secretary for UNC Children's Hospital. She's also a volunteer Chair of the CMV Community Alliance - North Carolina. No doubt, Kim keeps keeps busy! We're grateful that she took a bit of time to share a bit more about her family, as well as her work as an advocate and CMV parent.

Volunteer Spotlight: Rebekah Hall

Author: Rebekah Hall Meet Rebekah Hall. Rebekah is a doctor of clinical psychology, mother of 3, CMV advocate, and much more! We're excited to feature Rebekah in our volunteer spotlight during volunteer month. 

The Birth Deck: Q&A with Sara Lyon

Author: Kristen Spytek & Sara Lyon It’s OK to feel contradictory emotions simultaneously. Life is dualistic, it is dark and light at once, it is pain and beauty in the same instant. Having gratitude and anger in the same breath is normal and honoring that reality is extraordinary. When we encounter great challenges and allow ourselves to feel everything without judgement or resistance, we can thrive in the aftermath. 

The Ohio CMV Advocacy Project

In May, National CMV awarded the public health awareness mini grant pilot to The Ohio CMV Advocacy Project. We’d like to share their experience in hopes of inspiring others to begin advocating for CMV awareness, on behalf of and in partnership with National CMV, in their state.

Dancing With Shards of Glass

Author: Andrea Stambaugh A few weeks ago we went to The Kids Equipment Network to pick up an adaptive stroller/wheelchair for Axel. 

I have been fighting to get Axel a wheelchair for months. I had prepared myself in my mind. I was so excited for getting out of the house to be simpler. We talked about it the entire drive. Once we got there, they wanted us to put Axel into the wheelchair so they could fit it appropriately. I set him in the perfectly supportive bright green chair and I strapped him in. He looked up at me with a big smile, the way he always does. I smiled back. But, then it hit me. Like a ton of bricks. I just strapped my child into a wheelchair, for the first time. And I lost it.

The Baby After the CMV Baby

Author: Megan Nix My husband and I always knew we wanted a third child, even after our second daughter, Anna, was born with congenital CMV. Even though Anna’s needs (deafness and motor delays) require more time spent in therapies and doctors’ offices than we ever expected, Luke and I both came from bigger families, we wanted to gift our daughters with another sibling, and, I have to admit, I wanted another chance at a typical experience of pregnancy and motherhood.