Volunteer Spotlight: Kathleen Smith
Tell us about your professional/educational background.
I am currently the President of the Minnesota Association for Deaf Citizens. I have been a DeafBlind Intervener at Metro Deaf School (First Deaf Charter School in Minnesota that opened in 1993) in St Paul, Minnesota for 8 years. I am currently in the process of writing a book about my journey living with congenital Cytomegalovirus (cCMV).
What makes the National CMV Foundation's mission powerful for you?
It affects me personally because I was diagnosed with cCMV when I was 6 weeks old. That helped my parents get the interventions earlier than other babies. My parents and doctors were at least aware of “potential problems” I might have. Hopefully, in 5-10 years when researchers hope a CMV vaccine will be available, combined with mandatory newborn screenings, cCMV might be a “thing of the past,” like Polio.
What made you decide to get more involved with the National CMV Foundation, as a Community Alliance Chair?
One morning, I walked into the birth to three program classroom at Metro Deaf School and the teacher was introducing me to her students. She had three students and told me that two out of three were born with CMV and one was struggling to walk and also balance. I had to ask her again to repeat CMV. She repeated that and I was shocked because I had not heard CMV for years. I was born with CMV in April of 1980. She started to ask me questions about CMV. That made me realize that I feel I should do more about CMV and learn more about it. I wanted to go into advocacy to raise awareness about CMV and help new parents/families to ensure that their child(ren) will be fine with great resources that National CMV Foundation has to provide.
In your role as CMV Community Alliance Chair what goals have you set for 2024?
My role as CMV Community Alliance Chair, my goal for 2024 is to meet with parents with children who are deaf that were born with CMV and to set up a support group at Metro Deaf School and have families interact with other families and myself with CMV. I can be the role model for the child(ren) and their parents on how to live with CMV.
What does success look like to you?
Success to me looks like that in five years the parents who have children diagnosed with cCMV will have information about cCMV screening, vaccines and easy access to resources they may need for their children.
What motivates you?
What motivates me to be involved with the CMV Foundation is to be involved with families with child(ren) who were born with cCMV and hearing loss. I can be there because I also was born with cCMV and have profound, bilateral hearing loss. I can share my experiences
As a volunteer leader, what advice do you have for people who want to work on CMV advocacy, but don’t know where to start?
Start networking, meeting with families by asking around on social media. Another great resource to check out is the National CMV Foundation because they have many good resources such as bills that have passed in various states for CMV screenings.
What is your favorite quote?
“Always turn a negative situation into a positive situation”- Michael Jordan
What do you like most about living in Minnesota?
I grew up in Minnesota and love living here because we have four seasons.
You're happiest when?
Happy when I am around my family and friends and can do things I love to do!