Publications

Agans, G. (2023). Rare Disease, Advocacy, and Caregiver Burnout. American Journal of Bioethics, 23(7), 91–94. https://doi-org.ezproxy.cul.columbia.edu/10.1080/15265161.2023.2207509.

Turner, K., Kemp, C., Lesandrini, J., Morgan, J., Madison, B., Donohue, E., Agans, G. (2023) An Unexplored Moral Landscape? Examining Unique Ethical Issues in Assisted Living Communities. Society of Gynecologic Surgeons.

Parrish, L. & Agans, G. (2022). Licensed Clinical Social Workers, Advance Care Planning, and the COVID-19 Pandemic. National Association of Social Work Intersections in Practice,16, 13-14. https://www.socialworkers.org/Careers/Specialty-Practice-Sections/Intersections-in-Practice-Public.

Turner, K., Agans, G., Donohue, E., Madison, B., Lesandrini, J., Morgan, J., Kemp, C. (2022) Peeking Under the Covers: Examining Ethical Issues in Assisted Living Communities, Innovation in Aging, 6(1) 700. https://doi.org/10.1093/geroni/igac059.2562.

Agans, G. (2021). Barriers to Establishing an Advance Directive. NCUR

Speaking Engagements

Living with Duchenne Muscular Dystrophy in 2023. (2023). Parent Project Muscular Dystrophy with National Organization for Rare Disorders and PlatformQ Health Education. Panel Speaker. (Webinar)

Memento Mori: (2022). Kennesaw State University: Department of Psychological Science. Death and Dying Guest Lecturer. (In person)

Psychosocial Considerations for Women in Duchenne. (2022). Parent Project Muscular Dystrophy. Panel Speaker. (Webinar)

The Power of Us Summit. (2022) Parent Project Muscular Dystrophy. Panel Speaker. (In person)

Volunteer Work

Parent Project Muscular Dystrophy: Connect Coordinator for Georgia and South Carolina (2015-2017 and 2022-present). Duties of this role include meeting with families of boys newly diagnosed with Duchenne Muscular Dystrophy (DMD) and helping them connect with resources and other members of the DMD community.

DMD is one of the most common, fatal, genetic disorders diagnosed in children. Navigating the complexities associated with DMD can be overwhelming. As the parent and primary caregiver of a 16-year-old, non-ambulatory male living with Duchenne, as well as an end-of-life healthcare researcher, I recognize how critical community support is to caregiver and patient wellbeing. To that end, I organize and host a monthly, growth-oriented, book club for DMD mothers as well as a monthly gaming day for the boys to get together.

My co-coordinator and I also facilitate larger community events such as fund raisers, meet-and-eat gatherings, and holiday parties.