Abstract Details
9/09/2025 | 1:00 PM - 2:00 PM | Breakout 5 | Thomas H. Swain
Navigating Your Role as a CMV Parent/Caregiver: Two Mothers' Unique Journeys in Advocating for Their Children
Abstract Summary
Laija and Caroline first met in 2023 through the Patient and Community Engagement Research (PaCER) program at the University of Calgary, which focuses on empowering patients and community members to engage in research with the goal of incorporating patient voices into healthcare systems. The PaCER project they participated in examined parental perspectives on cCMV screening at birth in Canada (Beaulieu et al., 2024). They have also stayed connected through CMV Canada and collaborated on projects like a podcast (Zelinsky, 2024) and this presentation. Whether your advocacy is big or small, it matters - simply being here today is a form of advocacy. Laija and Caroline aim to define advocacy and explain different ways to advocate. Their goal is to create a supportive environment where families can consider all options and empower the CMV community to advocate in their own way. They will dive into their own journeys of cCMV, detailing how they became comfortable advocating for their children, the paths they took, how they currently advocate, and what this means to them.
Learning Objectives
- Define advocacy and different ways to advocate as a CMV parent
- The speakers will share their advocacy journeys and provide insights on how to feel comfortable while advocating
- How to acknowledge and/or incorporate advocacy, whether big or small, into your daily life as a CMV parent
Presentation
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Handouts
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Presenters
Laija Beaulieu | Primary Presenter, Co-Author
lbeauli1@lakeheadu.ca;
Laija Beaulieu is a current PhD student in the Health Sciences program at Lakehead University in Thunder Bay, Ontario, Canada. Thunder Bay is located in Northwestern Ontario and is considered a remote and rural city that serves many surrounding communities. Laija’s academic journey is inspired by her son, who is affected by cCMV and has profound bilateral deafness. Her son has received cochlear implants, which have restored his hearing, and Laija and her family are deeply grateful for this life-changing technology. However, living in a rural area has presented challenges in accessing healthcare for her family. Laija’s research takes a qualitative approach, focusing on raising awareness of CMV and cCMV, as well as advocating for equitable access to CMV-related healthcare services in remote and rural communities, which often face limited access to quality care.
ASHA DISCLOSURE
Financial - No relevant financial relationship exists.
Nonfinancial - No relevant nonfinancial relationship exists.
AAA DISCLOSURE
Financial - No relevant financial relationship exists.
Caroline Leroux | Co-Presenter, Co-Author
caroline.leroux@ucalgary.ca;
Caroline, is a Canadian CMV mother from Montreal,QC that now lives in Pittsburgh, PA. She is a Canadian manual care osteopath who is currently on extended maternity leave/sabbatical since 2022. Being a stay-at-home parent has enabled her to join the Patient and Community Engagement Research (PaCER) program at the University of Calgary (2023), where she was part of a group which conducted a research project on Cytomegalovirus (CMV). Caroline was diagnosed with CMV during her pregnancy and her daughter Jade (6) was born with congenital CMV (cCMV). As a result, Jade is attained by significant hearing loss and she proudly wears a cochlear implant and a hearing aid. With 15+ years of clinical experience as an osteopath and having lived through the hardships of the virus, Caroline cares deeply about advocacy for CMV research, and spreading awareness.
ASHA DISCLOSURE
Financial -
Nonfinancial -
AAA DISCLOSURE
Financial - No relevant financial relationship exists.