Register

Strides 4 CMV

$2,420 of $5,000 goal
48% Complete

Event Details
Strides 4 CMV - 5K

Run, Walk, Roll for Congenital CMV Awareness

See More See Less
When
Saturday August 17th
9 am
Where
Coffman Memorial Union, Washington Avenue Southeast, University of Minnesota - Twin Cities, Minneapolis, MN, USA
300 Washington Ave SE, Minneapolis, MN 55455, USA

Story

The Devereaux Family's story:

We had never heard of congenital CMV before our unborn child was diagnosed at 21 weeks gestation. We received 4 Cytogam infusions during the remainder of our pregnancy. Philippa "Pippa," was born at 34 weeks gestation, in 2015. Her current diagnoses include: intellectual disability, polymicrogyria, developmental delay, hearing loss, epilepsy. She is an extremely happy and sweet child. She is such a bright light for everyone that has the opportunity to know her. We are passionate about ensuring that all families learn about cCMV and how it can be prevented.

The Henrikson Family's story:

We started our journey with cCMV when our daughter Vivian was diagnosed at 2 days old.  Like many other families, we had never heard of cCMV and we were really intimidated by the unknown road ahead.  Vivian’s cCMV caused unilateral hearing loss, microcephaly, and cerebral palsy but luckily she was treated with antivirals right away to prevent further damage to her hearing.  She has had many doctor appointments, therapy and surgeries but despite all this, Vivian’s story is one of courage, strength and hope.  She is 5 years old and with her big beautiful smile and vivacious personality she is our daily inspiration and reminder of what hard work, determination and a positive attitude will get you.  She loves school, singing, dancing, riding her scooter and running with her friends and her brother.  This spirit has been contagious for our family, and one we are passionate about sharing with others.  We currently have a sponsored bill in front of the Minnesota legislature called the Vivian Act.  Once the bill is passed, it will bring much needed CMV awareness to families and medical providers across the state.

Posted by NATIONAL CMV FOUNDATION INC





Leaderboard