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Diane S.

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1 reviews

Review for Brendan B. McGinnis Congenital CMV Foundation, Wheat Ridge, CO, USA

Rating: 5 stars  

The Brenden B McGinnis COngenital CMV Foundation has been crucial in getting information out to the public, both the general public and professionals too about exactly WHAT this condition is and what it means to both the kids who have CCMV and their families. They have both also promoted, and helped fight for necessary research to develop a vaccine against cCMV. Both Tracy McGinnis and Chris Cady have children disabled by this virus so they know first had what the families who are affected by this virus are going through. They have offered both emotional and educational support to myself as my daughter who is now 7 was born with cCMV. Until finding this foundation, i felt alone in our fight unsure if the direction we were heading in was "normal" or if there was things going on with my child that i was unaware of, or what I should be looking for. My pediatrician has never knowingly treated a cCMV child, so we were both kind of "winging it". Now, with the support and network of this foundation, i know things that other parents have experienced with their children, what other doctors are saying and doing, and I feel that my child is on the right track towards the best future she can possibly have. My thanks to both Tracy Mcginnis and Chris Cady to take such an experience in their lives and share the inforation, experiences, and friendship with others so we dont all feel so alone in our battle to win the fight against congenital CMV infection.

I've personally experienced the results of this organization in...

networking to meet other families, both online and in person and obtaining information about my childs condition

If I had to make changes to this organization, I would...


Role:  General Member of the Public & i am avilable to talk to other parents of cCMV children to help spread our network of support.