Kristen Hutchinson Spytek is the president and co-founder of the National CMV Foundation, a patient advocacy group that aims to prevent pregnancy loss, childhood death, and disability due to congenital cytomegalovirus (CMV). The most common prenatal infection in the United States, congenital CMV is a herpes viral infection that results in a range of symptoms from symptomless to severely impacting the central nervous system, spleen, and liver. Here, Kristen shares her journey to rare disease advocacy, impactful work by the National CMV Foundation, and collaboration with the Congenital and Perinatal Infections Consortium (CPIC).
How did you get involved in advocacy work for rare diseases?
Like many others within this rare disease community, I have a personal connection to this important work, and it has become my passion project. My first child, Evelyn, was born with congenital CMV in 2013 and she tragically passed away in 2014 due to complications from a necessary gastrointestinal surgery.
CMV is the most common infectious cause of birth defects in the United States. It is ubiquitous and is transmitted through casual contact of bodily fluids. It typically presents as a cold or flu in healthy populations. However, CMV can pass through the placenta of a pregnant woman to an unborn child, often resulting in miscarriage, stillbirth, physical abnormalities, or long-term developmental disabilities. Possible outcomes include hearing loss, vision loss, autism, cognitive impairment, microcephaly, intracranial calcifications, cerebral palsy, seizures, and more.
When Evelyn was born, there was very limited access to information about children born with CMV or its corresponding diagnoses and outcomes. I joined online forums, attended a public health conference to meet other parents and experts, and ultimately co-founded the organization with five incredibly driven CMV moms. We each shared a calling to do more on behalf of our children and future babies, so we channeled our energy into action.
Can you tell us more about the National CMV Foundation?
We are the largest national CMV advocacy organization in the United States. Our team includes an incredible staff, a motivated group of board members, hundreds of parent volunteers, brilliant Scientific Advisory Committee members, determined community alliance chairs, and supportive partner organizations.
When we incorporated in 2014, we set out to raise awareness and educate women of childbearing age about congenital CMV. Now, there’s a much taller order. We must educate the public as well as healthcare professionals. We must secure federal funding to accelerate our research initiatives and corresponding advocacy work. We plan to build upon the many scientific advancements and public health learnings from the global pandemic, deepening our commitment to preventing pregnancy loss, childhood death, and disability due to congenital CMV.
How is the National CMV Foundation involved with CPIC?
CPIC continues to be an amazing partner network for National CMV. We’ve known and collaborated with many of the principal investigators and specialists within the consortium for several years, and it’s wonderful to have a seat at the table in a more formal capacity.
We believe that the patient advocate and/or caregiver experience is essential to operationalizing potential vaccines and clinical diagnostics, successful treatments, and appropriate interventions. Together, we aim to make more thoughtful, effective, and innovative advancements towards identifying and improving long-term developmental outcomes for our babies.
How do you support research?
We fund high-impact research awards, such as our Early Career CMV Research Award and the Pediatric Infectious Disease Society (PIDS) CMV Fellowship Award for CMV Research for young investigators. We also partner with institutions, industry, and thought leaders to influence research priorities regarding CMV prevention, screening, treatment, and intervention.
Our team members sit on relevant advisory committees, spearhead regional policy task forces, contribute to and publish meaningful research, and present current study findings at significant conferences, boosting our reach and fostering our mission.
What are your future goals?
Our goals are to raise awareness through advocacy, accelerate mission-driven research, target education programs, grow resources in support of the mission, and demonstrate commitment to diversity, equity, and inclusion.
Specifically, we hope for a global public health campaign disseminating honest and credible CMV prevention information, a national program to screen every newborn for congenital CMV, increased funding for clinical advances in CMV treatment and interventions, and an accessible and efficacious vaccine in-market.
The Congenital and Perinatal Infections Consortium (CPIC) is part of the Rare Diseases Clinical Research Network (RDCRN), which is funded by the National Institutes of Health (NIH) and led by the National Center for Advancing Translational Sciences (NCATS) through its Division of Rare Diseases Research Innovation (DRDRI). CPIC is funded under grant number U54AI150225 as a collaboration between NCATS and the National Institute of Allergy and Infectious Diseases (NIAID).