New York Stop CMV Project

06/12/2025

Lyla's story is the very reason we need to test EVERY newborn for CMV. Her mother, Kara Russell of Penfield, told me, "We didn’t discover that Lyla has congenital CMV until she was five. Her newborn dried bloodspot was pulled and tested due to the discovery of a hearing loss. Lyla was born full term and otherwise healthy, passing her newborn hearing screen so was not tested for CMV. Therefore, she never received the recommended regular hearing checks to catch the possibility of a progressive hearing loss.” Meet Lyla at: https://www.rochesterfirst.com/generation-roc/generation-roc-1st-graders-hearing-loss-inspires-mothers-advocacy/. Kara Russell is the New York National CMV Alliance Co-Chair. Contact: nationalcmvnys@gmail.com

ROCHESTER, N.Y. (WROC) — Like any other kid who wakes up in the morning, Lyla Russell gets dressed, eats her breakfast and brushes her teeth. One extra step for this special first grader—she puts o…

06/12/2025

June 2025 declared CMV Awareness Month in the State of New York: https://nyassembly.gov/leg/?default_fld=&leg_video=&bn=K00668&term=2025&Summary=Y&Actions=Y&Memo=Y&Text=Y

06/12/2025

Connecticut will start testing every newborn for CMV! Let's work at making New York the next state (bill already filed)! Thank you Ann Nyberg for all your hard work!

Congratulations to our neighbors in Connecticut! Check out the video to hear from different organizations around the world with the collective mission to ! As Nyberg states, CMV is "a GLOBAL problem!"

https://www.wtnh.com/on-air/nyberg/nyberg-connecticut-to-become-2nd-state-in-u-s-to-screen-newborns-for-congenital-cytomegalovirus/



National CMV Foundation Ann Nyberg

05/26/2025

One way we raised CMV awareness was to register our Challenge in the Erie Canalway National Heritage Corridor. Learn how you can register a Challenge for your child:

Erie Canalway Challenge - 05/22/2025

05/06/2025

Finally, after walking 360 miles on the Erie Canalway Trail leaving behind Stop CMV rocks, we finally reached the eastern end of the Erie Canal in Albany on 4/23/25. The next day, I went to the Legislative Office Building and asked the Assembly Health Committee members to pass the new CMV bill (A3956) to require testing all newborns for congenital CMV so those who are positive can receive antivirals within the first critical days to possibly improve hearing and brain growth. To celebrate finally becoming an "end-to-ender" on the Erie Canalway Trail, my e-book version of, "Walking the Erie Canalway Trail: A Search for 7 Wonders, Bathrooms and Beer to Stop CMV," is FREE May 7, 2025, and/or you can always "read sample" at https://www.amazon.com/Walking-Erie-Canalway-Trail-Bathrooms/dp/B0DR752NMR/ref=tmm_pap_swatch_0

02/20/2025

Please consider sending your letter to RFK Jr. or anyone who works to prevent autism and/or other disabilities.

" Children with congenital cytomegalovirus (cCMV) infection are about 2.5 times more likely to be diagnosed with autism spectrum disorder (A...

02/04/2025

Attention CMV Families: Register for free conference in Rochester March 21-22: https://docs.google.com/forms/d/e/1FAIpQLSfY41GSjnlJdQ8jH6TZw0t3s7NYwF8fEAABgo7x7l14oPPWTg/viewform

09/11/2024

New York Congressman Brandon Williams just signed on as cosponsor of Stop CMV Act 2024. New York Rep. Mike Lawler is House Sponsor:

Cosponsors of H.R.7542 - 118th Congress (2023-2024): Stop CMV Act of 2024

08/15/2024

My walk across New York with Stop CMV rock in interview:

Lisa Saunders on Her Journey - 07/16/2024

07/25/2024

Moms share what helped or hurt when getting cCMV diagnosis: https://www.nationalcmv.org/resources/blog/july-2024/how-doctors-can-support-a-mom-whose-child-is-diagn

07/12/2024

Upstate New York Families Fight CMV in the Pouring Rain! https://congenitalcmv.blogspot.com/2024/07/strides-4-cmv-new-york-5k-families.html (Brandi Hurtubise)

06/19/2024

"Saunders will be handing out her memoir at the Strides 4 CMV New York 5K on Saturday, June 29 at 11:00 a.m. at Knox Farms in East Aurora (https://strides4cmvny.funraise.org/)." https://eaglenewsonline.com/publications/baldwinsville-messenger/2024/06/18/this-cmv-awareness-month-mother-continues-to-share-her-story/