Abstract Details
9/24/2018 | 1:45 PM - 2:15 PM | Diamond Ballroom I
Approaches to Advocating for CMV in your State Department of Health
Several states have either enacted CMV legislation or are in the midst of moving CMV bills through legislatures. Some states have seen activity around CMV awareness and education in their health departments alongside or even without legislation.
Panelists will represent states that have either passed a CMV law or are currently working on legislation and relationship building. They will talk about experiences working with their state health departments and discuss different avenues they’ve explored (such as the EHDI or infant mortality systems.) They will compare obstacles and pathways to successful advocacy and respond to questions about how they created openings and built relationships with stakeholders in their state health departments.
Panelists will also provide examples of how they can serve as valuable stakeholders in moving forward CMV awareness, detailing the strengths and experiences that they can contribute to CMV action and to eliminating the impact of congenital CMV. This session is relevant for family members hoping to engage in advocacy at the state level with their departments of health. It is also relevant to clinicians and researchers hoping to support advocacy as stakeholders and build momentum within departments of health for increased CMV awareness and research. Participants will be encouraged to ask questions and think about relationship building with their own state department of health.
- Discuss avenues to advocacy within state health departments and identify various stakeholders.
- Identify ways to build relationships with stakeholders.
- Learn from experiences of parents and how to work around potential obstacles.
Presentation:
17739_9711HeatherInnis.pdf
Handouts:
No handouts have been uploaded.
Heather Innis (Co-Presenter), hinnis@me.com;
I'm a CMV parent in Ohio. I've been working with our department of health in primarily the EHDI and infant mortality systems as an advocate for increasing knowledge about congenital CMV. Recently, I helped shepherd through legislation that identifies June as CMV Awareness Month in the state of Ohio.
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ASHA DISCLOSURE: Financial - No relevant financial relationship exists. Nonfinancial - No relevant nonfinancial relationship exists. |
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AAA DISCLOSURE: Financial - No relevant financial relationship exists. |
Sara Doutre (Primary Presenter), saradoutre@gmail.com;
Sara Doutre's daughter, Daisy, is deaf due to congenital CMV. Sara is a former special education teacher and worked for the United States Department of Education's Office of Special Education Programs. She is a special education policy consultant and advises states on special education, disability and early intervention policy. Sara worked on Utah's CMV legislation and is a co-founder and board member for the National CMV Foundation.
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ASHA DISCLOSURE: Financial - No relevant financial relationship exists. Nonfinancial - No relevant nonfinancial relationship exists. |
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AAA DISCLOSURE: Financial - No relevant financial relationship exists. |
Kathleen Muldoon (Co-Presenter), kmuldo@midwestern.edu;
Kathleen M. Muldoon, Ph.D. is an anthropologist and Professor of Anatomy at Midwestern University, Glendale. Through her experiences with disability, she became interested in science communication, and the effectiveness of professional education on public health knowledge, empathy, and humanity in medicine. She is the proud parent of three children: her middle child has multiple disabilities due to congenital cytomegalovirus (cCMV).
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ASHA DISCLOSURE: Financial - No relevant financial relationship exists. Nonfinancial - No relevant nonfinancial relationship exists. |
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AAA DISCLOSURE: Financial - No relevant financial relationship exists. |
Kim Hill (Co-Presenter), hill.kns@gmail.com;
Kim Hill is the mother of 4 and lives in Raleigh, North Carolina. Her 10 year old daughter has bilateral sensorineural hearing loss due to CMV and has cochlear implants. Kim is passionate about CMV education and advocacy work and is a community alliance chair member for the National CMV Foundation. She also works as a parent educator for the North Carolina Division of Public Health teaching leadership and advocacy skills to parents across the state through the Parents as Collaborative Leaders Program. Kim is the board secretary for the Patient and Family Advisory Board at UNC Children’s Hospital. She has a degree in sociology from Utah State University.
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ASHA DISCLOSURE: Financial - No relevant financial relationship exists. Nonfinancial - No relevant nonfinancial relationship exists. |
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AAA DISCLOSURE: Financial - No relevant financial relationship exists. |