Abstract Details
10/10/2023 | 1:30 PM - 2:30 PM | Courtroom
Finding Your Village: A Family's Guide to Building Your Support Network
Abstract Summary
While congenital CMV is arguably one of the most common infectious causes of birth defects, the general public’s lack of awareness and the lack of conversation on a national level can lead families with affected children to feel isolated, unseen and unsupported. When 1 in 5 infants born with cCMV will have a permanent birth defect or long- term health condition, families of these children need support and they need to know how to get it. This presentation will share one family’s journey navigating the odyssey of post diagnosis care for their child and their journey raising awareness of CMV as they found their voice and the courage to speak out. Supports available to families, resources for children and ideas for ways to bring education and advocacy to local communities will also be discussed.
Learning Objectives
- Participant will list how CMV can be transmitted and how to prevent the transmission before and during pregnancy.
- Participant will list 3 potential outcomes for children born with congenital CMV
- Participant will list 3 National organizations and/ or regional resources that can provide support to families of children born with cCMV
Presentation
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Handouts
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Presenters
Lisa Eickel | Primary Presenter
eickel.lisa@gmail.com;
Lisa works as the DHH Project Director at The Center for Family Involvement and the Family Engagement Coordinator at the Educational Hub for Sensory Disabilities within the Partnership for People with Disabilities at Virginia Commonwealth University. She serves as Co-Chair of the Virginia EHDI Advisory Committee and Community Alliance Chair with the National CMV Foundation for Virginia.
Lisa graduated with her Undergraduate and Graduate Degrees from James Madison University. She worked as a pediatric Speech- Language Pathologist across a variety of settings, including Early Intervention, private practice, charter and public schools. Lisa became passionate about supporting parents as they navigate hearing differences in their children as well as educating others on Cytomegalovirus (CMV) when her son was born affected by the virus in 2017. Lisa and her family live in Loudoun County, Virginia.
ASHA DISCLOSURE
Financial - Receives Salary for Employment from Virginia Commonwealth University.
Nonfinancial - Has a Personal (Caregiver for child born with CMV) relationship for Volunteer employment,Volunteer teaching and speaking.
AAA DISCLOSURE
Financial - Receives support from Center for Family Involvement at Virginia Commonwealth University (L. Eickel) for Virginia EHDI Advisory Committee Co-Chair (L. Eickel).