Volunteer Spotlight: Lindsay Lawless
Tell us about your professional/educational background.
I am an Inside Sales Manager working in Business Development for a construction management company in Philadelphia. I graduated from American University in Washington, DC in 2012 and got my MBA from Temple University in 2019.
What makes the National CMV Foundation's mission powerful for you?
My daughter, Wynne, was born via emergency c-section in December 2018 at 35 weeks and 6 days old, after what we believed to be a completely normal and uneventful pregnancy. I went to my OB's office for a routine prenatal checkup and it was discovered through the doppler that her heart rate was falling and rising rapidly. I was immediately sent to the hospital where, after 6 hours of monitoring, the doctors decided that she needed to be delivered as soon as possible. To make a very long story short, she passed away in our arms at 9 days old due to multiple, devastating effects related to CMV.
I had never heard of CMV before delivering Wynne, but was shocked to find out that it is surprisingly more common than many of the many of the pregnancy-related viruses and disorders that women are routinely warned about. More US children are born with or develop long-term medical conditions due to CMV than due to other more well-known conditions such as down syndrome, fetal alcohol syndrome, spina bifida, HIV, and Zika, to name a few. It is more common than the 29 combined metabolic and endocrine disorders in the recommended US newborn screening panel. It is the most common non-genetic cause of childhood deafness and hearing loss.
The NCMVF’s mission is powerful to me because this devastating virus NEEDS to be talked about. People need to know the devastating impact it can have and means with which to protect themselves and their babies.
What made you decide to get more involved with the National CMV Foundation, as a Community Alliance Chair?
I am so excited to have the opportunity to be a Community Alliance Chair with NCMVF! I am passionate about CMV awareness (particularly legislation) and NCMVF has been amazing in providing the connections and giving me the tools I need to help push through the CMV Education and Newborn Screening Act (HB 1220) here in Pennsylvania. This legislation is currently sitting in the PA Senate Health and Human Services Committee. After being passed unanimously in the House, I am hopeful it can pass fully this year!
Being a Community Alliance Chair with NCMVF helps me carry on my sweet baby girl’s legacy, and I am honored to be able to do so.
In your role as CMV Community Alliance Chair, what goals have you set for 2020?
My major goal for 2020 is helping pass HB 1220 in PA. This bill requires PA’s Department of Health to provide up to date, evidence-based information regarding CMV and contact information regarding support programs. It also requires health care practitioners that assume responsibility for the prenatal care of a pregnant woman or a woman who may become pregnant to provide the educational information regarding CMV made available by the department of health. In addition, it requires birthing facilities that assume care of a newborn child to screen the newborn child for CMV before the newborn child is 21 days of age if the newborn child fails the newborn hearing screening or at the parent’s request.
Other goals include fundraising and raising awareness of CMV within the Philadelphia area.
What does success look like to you?
Success, to me, is increasing awareness of CMV so that a vaccine can be developed. I cannot think of any better way to honor my baby girl’s memory than to prevent what happened to her from happening to thousands of other babies.
What motivates you?
My baby girl Wynne motivates me. She was perfect and she was a warrior. She fought so hard and now I get to fight for her.
I have a three-year-old son, Tommy, and a newborn baby girl, Paige. They motivate me to be a better person every day. I want them to see that you can grow from tragedy.
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?
Rely on NCMVF for ideas and opportunities to get involved. After losing Wynne, I researched to see what was being done about this devastating virus. That lead me to NCMVF’s advocacy page where I learned about the proposed PA legislation. I was able to get in touch with my state’s legislative sponsor and that got the ball rolling (and it hasn’t stopped since!)
“Perpetual optimism is a force multiplier.” I got that in a fortune cookie when Wynne was in the NICU. I’ve tried to live by that ever since.
What do you like most about living in Abington, Pennsylvania?
We moved to the Abington area last July. We love our house and neighborhood! My children’s future elementary school is right across the street from our neighborhood and it is a great community for them to grow up in. It is 25 minutes from Philadelphia.
Philly is an amazing city that sometimes gets a bad rap (undeserved, in my opinion!). We have a rich history, wonderful food and culture, and beautiful surrounding nature! We are right in between NYC and DC and have all four seasons to enjoy! The Pocono mountains and the Jersey shore are such a close drive away. I wouldn’t want to live anywhere else!
You can’t go wrong with our soft pretzels, water ice, and hoagies!
You're happiest when?
I’m happiest when I am outside with my family. Also, when eating chocolate chip cookies, haha.
Category: Advocacy, Awareness, Community, "Fueling Our Mission", "Parent Perspective"