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9/26/2014  |   10:45 AM - 11:15 AM   |  Topical Session 2   |  Idaho

Accelerating CMV Advocacy Efforts: The Vital Role of Parent Partners

There is no greater CMV expert than a parent of a child born with congenital CMV. We come from all walks of life and while our stories are all very different, there is one commonality between us all: our lives were changed by CMV, for better and for worse. Utilizing websites and social networking, Stop CMV has built an international online community of impacted families, offering information and support to individuals, parents, and caregivers dealing with the affects of congenital CMV. The last few years, parents affected by CMV have been trying to raise awareness of CMV by posting PSAs, engaging in media and internet outreach, and pitching celebrities and other notable figures like Oprah and President Obama. These are creative and valuable ideas, but they alone aren’t stopping congenital CMV. There is a significant gap within public and professional policy as it relates to CMV and, in turn, we aren’t seeing the response, priority, and funding needed to progress and hasten CMV solutions. Grassroots advocacy is primarily about communication and relationships, initiated and fostered by parent partners. Parent partners play a crucial role in advocacy initiatives at the federal and state level, including outreach, attendance at legislative venues, and continued support of CMV educational programs. To date, parent partners have been instrumental as the United States Senate passed legislation recommending that “more effort be taken to counsel women of childbearing age of the effect this virus can have on their children” while designating June as “National Cytomegalovirus Awareness Month”. Additionally, parent partners have played key roles in the legislative process in Utah, as well as in Connecticut and Illinois.

Janelle Greenlee (Primary Presenter), janelle@stopcmv.org;
Janelle Greenlee is the founding president of Stop CMV, the world’s largest all-volunteer organization dedicated to CMV (cytomegalovirus). Comprised of families, friends, and medical professionals personally affected by CMV, the mission of Stop CMV is to prevent and eliminate congenital CMV and to improve the lives of all people affected by congenital CMV. A graduate of California Polytechnic State University with a background in marketing and public relations, she developed the Stop CMV brand and website after her twin daughters were born affected with congenital CMV in 2003. Under her leadership, Stop CMV transitioned from an international web-based grassroots movement into a 501c3 non-profit advocacy organization in 2009.

ASHA DISCLOSURE:

Financial - No relevant financial relationship exist.

Nonfinancial - No relevant nonfinancial relationship exist.

Presentation:
325JanelleGreenlee.pdf

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