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9/24/2018  |   8:30 AM - 9:45 AM   |  Catamount Room

Advocating for Change: Parent Experiences in Policy and Community Engagement

Parents continue to lead the way in changing public health and policy and bringing attention to CMV. Thisplenaryfeatures parents who used knowledge and energy they gained from the 2016 CMV Public Health and Policy Conference in Austin, Texas to make a difference in their states. Each parent has built key relationships and faced barriers but has moved CMV awareness and screening work forward. Parents will share their lessons learned to inspire additional work and empower parents and professionals to becomeadvocates for CMV awareness and prevention.

  • Explain how the Iowa CMV Law was passed
  • Explain the components of the Iowa CMV Law
  • TBA

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Amanda Devereaux (Co-Presenter), amandakdevereaux@gmail.com;
Amanda grew up in Des Moines, Iowa. She graduated from the College of St. Benedict in Minnesota in 2007, with her Bachelor’s degree in Nursing. She worked as a nurse in Minnesota for 7 years before moving back home to Iowa. Amanda currently works as a nurse home visitor for Maternal Child Health. She enjoys spending time with her husband, Paul, and 2 children, Atticus and Pippa. Pippa was born with Congenital CMV in 2015. Amanda started the Iowa CMV Network as a way to work on CMV legislation in Iowa. Amanda is passionate about advocating for children and families affected by Congenital Cytomegalovirus.

      ASHA DISCLOSURE:

Financial - No relevant financial relationship exists.

Nonfinancial - Has a Personal (I have a child born with cCMV. I participate in the Congenital and Inherited Disorders Advisory Committee for the state of Iowa.) relationship for Volunteer membership on advisory committee or review panels,Other volunteer activities.  


      AAA DISCLOSURE:

Financial - No relevant financial relationship exists.




Rebekah Ponsford-Hall (Co-Presenter), tba;
With a doctorate in clinical psychology from Fuller Theological Seminary’s School of Psychology in Pasadena, California, Rebekah works professionally as a diagnostician and treatment provider for children with developmental and intellectual disabilities. She and her husband, Jeff, also a psychologist, had worked in the field for nearly a decade before the birth of their daughter, Keira. After what was thought to be a normal, healthy pregnancy, Keira was born very sick and was diagnosed with CMV at 3-days-old. Keira suffers from microcephaly, cerebral palsy, failure to thrive, and vision impairment. Rebekah is happy to be part of the Idaho CMV Advocacy Project, the team that worked to pass Idaho’s first CMV-related legislation in 2017.

      ASHA DISCLOSURE:

Financial -

Nonfinancial -


      AAA DISCLOSURE:

Financial - No relevant financial relationship exists.




Laura Sweet (Co-Presenter), tba2;
Laura lives in Cumberland, Maine with her husband, Joe, and their two children, Henry and Jane. Jane was born with congenital CMV in November 2014. Laura works at Bowdoin College as the Program Placement and Outreach Coordinator in the Education Department. She is also a member of the Maine Center for Disease Control and Prevention’s CMV work group, currently focusing on the implementation of CMV education and newborn screening initiatives in Maine. Laura earned a bachelor’s degree in geography from the University of Colorado Boulder, a master’s degree in anthropology from the University of California Santa Barbara, and a master’s degree in international education from the SIT Graduate Institute.

      ASHA DISCLOSURE:

Financial -

Nonfinancial -


      AAA DISCLOSURE:

Financial - No relevant financial relationship exists.




Amy Nelson-Horton (Primary Presenter), njd02@hotmail.com;
Amy grew up in Stayton, Oregon. She currently lives in Oregon City, Oregon with her husband, Michael, and their three children: Nolan, Hudson, and Magnolia. Nolan was born with Congenital CMV in 2002. For 18 years Amy worked for several major cosmetic companies. After the birth of her third child, she decided to stay home with her children and dedicate her spare time to raising awareness, and advocating for children and families impacted by Congenital CMV. Amy is the champion of CMV legislation in Oregon and has been working closely with the Oregon Health Authority to come up with resourceful ways to educate, raise awareness, and implement the new CMV law in her state.

      ASHA DISCLOSURE:

Financial - No relevant financial relationship exists.

Nonfinancial - No relevant nonfinancial relationship exists.


      AAA DISCLOSURE:

Financial - No relevant financial relationship exists.