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9/24/2018  |   2:15 PM - 2:45 PM   |  Emerald Ballroom I

Raising CMV Awareness through Existing Communities: My Experience with Illinois Hands & Voices

When a family receives a congenital CMV diagnosis, there are many feelings that occurs. At some point in the process of accepting the diagnosis and adjusting to what that means for a family, many parents want to engage in some sort of activism to raise CMV awareness and let more people know about CMV. However, the CMV community is relatively small and families often do not have time to take on the task of creating a new CMV advocacy community in their state or city and to develop the structure needed to reach other families. Andrea Stambaugh, a CMV mom from Illinois, solved this problem by becoming a board member for Hands & Voices Illinois. This gives her an opportunity to advocate for CMV awareness and to support other CMV families within the structure of an existing organization. Andrea will share her story, how she got involved, and the benefits of being involved in Hands & Voices which has chapters in nearly every states. Participants will talk about other existing communities where they can participate to both receive support and advocate for CMV awareness.

  • Identify existing community engagement efforts where CMV it makes sense to talk about CMV.
  • Develop ideas about what a CMV parent can contribute to existing communities, like Hands & Voices.
  • Create a plan for developing relationships with existing communities.

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Andrea Stambaugh (Primary Presenter), andrea_stambaugh@yahoo.com;
My name is Andrea Stambaugh. I have one son, his name is Axel and he was born with congenital CMV. Axel will be two in June. He is severely affected by the virus. I work on the board of directors for IL Hamds & Voices where I am the only CMV mom. I have been able to bring CMV Awareness to our state chapter as well as headquarters! Our family had a professional CMV Awareness video made. My son also has a blog on Facebook, “Axel’s Journey With CMV”

      ASHA DISCLOSURE:

Financial - No relevant financial relationship exists.

Nonfinancial - No relevant nonfinancial relationship exists.


      AAA DISCLOSURE:

Financial - No relevant financial relationship exists.