Volunteer Spotlight: Laura Sweet

Volunteer Spotlight: Laura Sweet

After our daughter was born with cCMV, I changed careers in order to focus more on her early needs. I now work part-time in the Education Department at Bowdoin College as the Program Placement and Outreach Coordinator. I love my work with students, faculty, and our local public school partners. My previous career was with nonprofit international education organizations. I studied geography at the University of Colorado Boulder as an undergraduate and then received a master's degree in anthropology from the University of California Santa Barbara. I also have a master's degree in international eduation from the School for International Training in Vermont. 

What makes the National CMV Foundation's mission powerful for you?
 
It is completely unacceptable that 91% of women do not know about CMV. There are such simple steps I could have taken during pregnancy to protect my daughter, if only I had known. The National CMV Foundation’s work is of critical importance to women, families, researchers, clinicians, and policymakers. They have been an invaluable source of information and support for me, and empowered me to work on raising CMV awareness here in Maine.

In your role as CMV Community Alliance Chair*, what goals have you set for 2019?

• Continue working with the Maine CMV work group to implement the recommendations set forth in our report to the legislature, including: 

1. ​Provide education on the causes, symptoms, and prevention of cCMV to all parents, caregivers, and providers working with children, infants, and pregnant women.
2. Convene a work group to develop and disseminate educational information and materials to key stakeholder groups.
3. Require a targeted screening approach with the long-term goal of universal screening. 
4. Explore the option of utilizing bloodspot tests to screen for cCMV. 
   • ​​​​​Provide CMV educational presentations to various groups in Maine and more broadly across New England
   • Host fundraising events, beginning with a nonprofit night at Elsmere BBQ on Tuesday, June 4 in Portland. More info.
   • Build a broader network of Maine and New England-based CMV families
   • Run the NYC Marathon with the Compete 4 CMV team! Visit my fundraising page for more details.

What does success look like to you?

Collaboration. A diverse group of stakeholders working together towards a common goal. Our Maine CMV work group was created because of our "failed" CMV legislation - yet the consensus we came to, and the recommendations put forth regarding CMV screening and education, are an incredible success. What motivates you?
​ 
The CMV parent and family advocates I’ve met. They all have such inspiring stories. Without them, I wouldn’t have believed I could make a difference here in Maine and wouldn’t have known where to start. And of course, my daughter, Jane. Behind her bright blue eyes and big smile is one of the most determined, strong-willed kids you’ll ever meet. She motivates and inspires me every day.
 
As a volunteer leader, what advice do you have for your fellow volunteers?
 
Remember that your voice and personal experience with CMV is incredibly powerful and impactful. None of us voluntarily chose CMV, but we can choose the actions we to take to make a difference for other women, children, and families.

Favorite quote?
 
“Don’t let perfect be the enemy of good” (or something along those lines). I’m not sure who to officially credit, but CMV expert Dr. Mark Schleiss referenced it during a conversation with our Maine CMV work group. It really resonated with me, both personally and in regards to our CMV screening and education initiatives.
 
What do you like most about living in Maine?

It's hard to narrow it down, but Maine's beautiful coast, mountains, lakes, and the endless opportunities for outdoor recreation are probably what I enjoy most.
 
You're happiest when?
 
I’m surrounded by my family – my husband, Joe, our son Henry (almost 7), our daughter Jane (4), and our black lab Elly (the sweetest family dog EVER). It’s an added bonus if we’re on skis, swimming in a lake, spending a sunny afternoon at the beach, or sitting by a campfire. I am so grateful for the joy and laughter they bring me every day.


*The CMV Community Alliance is a newly launched pilot program for top CMV advocates per our strategic plan. Learn more about the CMV Community Alliance.