"Strides 4 CMV New York 5k" 2024.
(Images submitted by Brandi Hurtubise and Kristin Schuster)
IMMEDIATE RELEASE
Lisa SaundersLisaSaunders42@gmail.com
Families Endured a Downpour to Stop CMV, Leading Viral Cause of Birth Defects
"Strides 4 CMV New York 5k" was organized by Brandi Hurtubise, New York National CMV Foundation Community Alliance Chair
Families and friends of seven girls disabled by the leading viral cause of birth defects, congenital cytomegalovirus (CMV), gathered in the pouring rain at Knox Farm State Park in East Aurora (near Buffalo) on June 29, 2024, in honor of "National June CMV Awareness Month," to raise funds for the National CMV Foundation to combat the disease ("Strides 4 CMV New York 5k").
Lisa and Jim Saunders of Baldwinsville, the oldest parents at the "Strides 4 CMV New York 5k," marveled at the dedication of the families who overcame the obstacles of attending the outdoor, rainy event -- and the profound love these families showed for their daughters. Lisa, who has been advocating for CMV prevention education since her daughter Elizabeth was born with microcephaly (small, damaged brain) in 1989, said, "I only wish these families had heard of CMV prevention strategies before getting pregnant. Hopefully, the new CMV education law in New York and the national Stop CMV Act of 2024 will decrease the numbers of babies born with congenital CMV, which the CDC estimates to be one in 200." When Lisa was pregnant with Elizabeth, she was a licensed, in-home childcare provider, a church nursery volunteer and the mother of a toddler - all activities that put her at high risk for CMV. Elizabeth died during a seizure at the age of 16 in Rockland Country, New York. Lisa is the author of memoir, "Had I Known about CMV: From Shock to Law," and is currently walking 360 miles between Albany and Buffalo, leaving behind Stop CMV rocks with prevention tips.
According to the CDC, "You can lower your chances of getting CMV by reducing contact with saliva (spit) and urine from babies and young children. Make sure you: Do not share food, utensils, cups, or pacifiers with a child. Wash your hands with soap and water after changing diapers or helping a child to use the toilet" (cdc.gov/cytomegalovirus).
The following other mothers attending "Strides 4 CMV New York 5k" can be seen in these images submitted by Brandi Hurtubise and Kristin Schuster:
(Left to right: Jessica Keukelaar, Kristin Schuster, Brandi Hurtubise, Angela Cote, Kara Russell, and Tabitha Rodenhaus.)
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Jessica Keukelaar of Macedon is the mother of Kyleigh, born with congenital CMV in 2018. When Jessica was pregnant with her firstborn Kyleigh (seen below), she was a child care provider in a daycare center and unaware of her occupational hazard for CMV. "Congenital CMV has affected every aspect of Kyleigh’s life, as well as our whole family. I wish that someone took the time to educate me about CMV since I was at an increased risk of infection.” Jessica designs CMV awareness logos for placement on her family's clothing to raise awareness.
(Kyleigh raises awareness of CMV with her bib created by her mom, Jessica.)
Kristin Schuster of Canandaigua, mom to Autumn (born 2015), said, "Unfortunately, my daughter wasn't diagnosed with congenital CMV until 18 months old--well after the opportunity had passed to receive treatment most effective when given between ages zero to six months." She said, "I was teaching in a pre-kindergarten inclusion classroom while pregnant with Autumn and was unaware of the dangers of CMV exposure."
(Kristin and daughter, Autumn.)Brandi Hurtubise of Buffalo, New York National CMV Foundation Community Alliance Chair: "On January 26, 2016 Samantha was born. The delivery room filled with doctors and nurses that began to immediately use the word microcephaly...As a result of Congenital Cytomegalovirus, Samantha has spastic quadriplegia cerebral palsy, microcephaly, epilepsy, profound hearing loss, and is legally blind... CMV is something that everyone should be talking about; at the very least it needs to be that piece of knowledge that's at the back of your brain and stored away for another day" (Strides 4 CMV New York 5k). Brandi can be reached at nationalcmvny@gmail.com.
Angela Cote of Buffalo appreciates the 2018 New York CMV testing law because it helped doctors diagnose why her daughter Elise failed her hearing test giving her options for early intervention. But Angela wishes she had known about CMV and how to prevent it BEFORE her pregnancy with Elise--especially since Angela had an occupational risk for it. She said, "Not once have I ever heard of CMV or was told about CMV. I was a nanny so I was around children a lot as well as having my daughter, who was a toddler at the time I became pregnant with Elise. Not my OB or any other doctor mentioned or screened me for CMV to see if I had been exposed in the past." (Lisa Saunders interviewed Angela Cote and Brandi Hurtubise on her local access TV show: CytoMegaloVirus (CMV) - What Moms Wished They Knew, PAC-B TV, 2021).
Kara Russell of Penfield: "My daughter is the perfect example of why all newborns should be tested for CMV and receive early intervention in their first critical months of life. Lyla, my youngest child, was born full term and otherwise healthy, passing her newborn hearing screen. So, she was not tested for CMV. Therefore, she never received the recommended regular hearing checks to catch the possibility of a progressive hearing loss. It wasn't until Lyla's five-year well check in summer 2023 that we learned she had profound unilateral hearing loss – that she was completely deaf in her left ear. We have no idea how long she was unable to hear accurately, even though she had been receiving speech services since age four as well as occupational therapy for coordination and balance delays. Nobody ever suggested checking her hearing. According to the CDC, ‘Hearing loss can affect a child’s ability to develop communication, language, and social skills. The earlier children with hearing loss start getting services, the more likely they are to reach their full potential’ (CDC/HearingLossinChildren)" (statement emailed to Lisa Saunders on May 6, 2024). Kara Russell is the New York National CMV Alliance Co-Chair and can be reached at: nationalcmvnys@gmail.com.
Tabitha Rodenhaus of Kenmore is the mother of Kaia (born with congenital CMV in 2016) who paints Stop CMV rocks for distribution across New York and beyond because Kaia enjoys watching her mom work. She said, "Kaia has taught us to always embrace the gray despite her diagnosis. She's always smiling and shining bright."
In 2022, the New York Governor signed “Elizabeth’s Law” (S6287C/A7560), named in memory of Jim and Lisa's daughter, which “Requires the provision of informational materials to child care providers and certain physicians and midwives regarding the impacts and dangers of congenital cytomegalovirus infection.” On September 20, 2023, a universal CMV testing bill was filed in New York (A07997/S07659), which "requires cytomegalovirus screening for every newborn..."
In addition, "The New York State Department of Health announced that effective October 2, 2023, all babies will be screened for Congenital Cytomegalovirus (cCMV), making New York the second state in the nation, after Minnesota, to screen all babies for the virus". The NY Newborn Screening Program is provisionally adding congenital CMV (cCMV) to its "screening panel for a period of one year" using dried blood spot (DBS) (“Congenital Cytomegalovirus (cCMV) Screening | New York State Department of Health”). The goal of testing every newborn for cCMV for one year is to help answer questions about whether or not universal cCMV screening can be successful nationwide. They need to see if cCMV can be detected by dried blood spot newborn screening and "Is catching and diagnosing cCMV at birth helpful?" It is believed that "Screening in a diverse population like New York will help determine true incidence" (Bradley).
Dr. Andrew Handel, who saw these images from the rainy "Strides 4 CMV New York 5k", emailed the mothers in attendance, "It's great to see/meet all of you! If there was ever a great analogy for cCMV families/advocacy, smiling while running a 5K through a rainstorm, this must be it. Please let me know how we can collaborate on your advocacy work. For those of you who I haven't met, I'm a Pediatric Infectious Disease doc from Long Island and one of the study leads on PROACTIVE NYS (https://www.proactivenys.org/), a long-term follow-up study of children with cCMV identified on the NYS newborn screen. I meet monthly with the DOH's CMV Newborn Screen team and the Peds Infectious Disease providers around NYS who care for children with cCMV. We've recently been discussing how best to advocate for NYS legislation making cCMV a permanent part of the NYS Newborn Screen. I would love to have your thoughts on where we go next in NYS and how the medical world can support your advocacy efforts." (To learn more about the pilot study, visit: www.proactivenys.org, or contact Andrew Handel, MD, Renaissance School of Medicine at Stony Brook University, at: andrew.handel@stonybrookmedicine.edu).
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