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9/26/2014  |   4:30 PM - 6:00 PM   |  

We Cannot Wait for the Science: The Importance of Grassroots CMV Advocacy

Annie Culley lost her baby to CMV at 24 weeks. Sara Doutre’s 3 year old daughter is deaf due to CMV and wasn’t diagnosed for almost two years. Neither mother knew about CMV before becoming pregnant or heard about it during previous pregnancies. Both mothers received mixed information from their doctors – including that their babies were fine and not to worry. But, had they known and worried just a little, they could have healthy little girls today. When asked why doctors don’t tell their pregnant or wanting-to-become pregnant patients about CMV, anecdotal evidence tells us they are “waiting for the science.” We’ve heard statements like, “there isn’t a treatment,” “the tests are finicky,” “it’s so rare that it’s not worth testing for,” “if you have the antibodies, you’re fine,” and “I haven’t heard of CMV.” We understand the importance of science, research and data and look forward, with those doctors, to definitive studies, treatments, and maybe even a vaccine. However, until then, raising awareness and promoting prevention is a responsibility we don’t take lightly. We believe that this advocacy is best conducted at a community level and among peers. The more women ask their doctors about CMV, the more doctors will become educated. The more women that promote prevention among their peers, the better. Annie and Sara are doing their part in their communities by attending health fairs, talking to everyone, and even forming a local non-profit to help the Utah Department of Health reach the more rural areas of the state.

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 private special education consultant and advises states on special education, disability and early intervention policy. Sara is the parent member of the team responsible for Utah's CMV Public Health Initiative legislation and co-founder of the Utah CMV Council.

ASHA DISCLOSURE:

Financial - No relevant financial relationship exist.

Nonfinancial - No relevant nonfinancial relationship exist.

Annie Culley (Co-Presenter), annie_culley@yahoo.com;
I am from Tooele Utah. I was raised in Parowan Utah. I have a degree in Non destructive testing . I worked for an aerospace company for 5 years and I was once a professional rodeo bullfighter. Nothing I have done in my life has been as rewarding as being a mom. I am a mother of 6 year old twins and my cCMV angel who would have turned 2 on September 26. 2014. I now work with my husband to manage our successful lawn care maintenance company. My favorite things to do are hangout with my children, go camping, play softball and basketball and do anything that involves spreading awareness of CMV.

ASHA DISCLOSURE:

Financial - No relevant financial relationship exist.

Nonfinancial - No relevant nonfinancial relationship exist.

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