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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;
As Co-Chair for Michigan with the National CMV Foundation's Community Alliance Program, I work to advocate for cCMV. I am a mom to a 2 year daughter with cCMV. She was born with profound hearing loss, has cochlear implants. and has severe gross motor delay. Before becoming entrenched in cCMV advocacy, I have been a clinical research professional for over 10 years and have a Master's degree in Public Health.

      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. .