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8/22/2022  |   3:30 PM - 3:55 PM   |  Confederation II/III

Parenting a child with cCMV: resources, support and areas for improvement

The dearth of resources available to help families navigate their congenital CMV (cCMV) journey is undoubtedly influenced by the lack of awareness and knowledge within the medical community and invisibility of the virus within the public sphere. My daughter was born with bilateral profound sensorineural hearing loss, and had several subclinical signs of cCMV at birth, and yet her diagnosis and initiation of treatment was delayed, burdensome and plagued with uncertainty. This presentation will review the support and resources available to families from healthcare providers and organizations through the lens of my daughter’s cCMV journey. It will review the essential services she received at different points in her journey from diagnosis to treatment and intervention. It will also highlight the gaps in support and services accessible to families and opportunities for improvement.

  • Identify 3 specific resources or support available to cCMV families
  • Describe 3 gaps in support and services accessible to cCMV families
  • Explain how the scarcity of cCMV awareness affects the availability of support to cCMV families

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Session Evaluation


Samantha Nikirk (POC-Point of Contact,Primary Presenter), samjwalk@med.umich.edu;
Samantha Nikirk, MPH, CCRC is the Clinical Research Program Manager of the Cirrhosis Program at the University of Michigan in the Division of Hepatology. She serves as the Director of national multi-site clinical trials. She is Co-Chair of the Michigan Congenital CMV Community Alliance for the National CMV Foundation. Ms. Nikirk has partnered with several organizations to create patient and clinician-focused congenital CMV resources including the American Academy of Pediatrics, MedScape, Hands and Voices, and WebMD. She also sits on the Michigan Early Hearing Detection and Intervention Advisory Committee and is a Newborn Screening Ambassador with Expecting Health. Most importantly, she is the proud mother to two little girls, one of whom has congenital CMV and is Deaf and autistic.

      ASHA DISCLOSURE:

Financial - Receives Honoraria excluding diversified mutual funds for Teaching and speaking from Medscape/WebMD.  

Nonfinancial - No relevant nonfinancial relationship exists.


      AAA DISCLOSURE:

Financial - Receives support from Medscape/WebMD for Medscape/WebMD has paid me honorariums for videos and recordings of my daughter's cCMV story. They have used these for educational content for families, CME accredited webinars and podcasts. .