At 平特五不中鈥檚 Ingram School of Nursing (ISoN), child health is a major area of focus for many of our faculty members and researchers. Among them, Dr. Argerie Tsimicalis, Assistant Professor, whose main area of interest is improving the quality of life of children living with Osteogenesis Imperfecta(OI)鈥攁 genetic bone disorder characterized by fragile bones that break easily, also known as 鈥渂rittle bone disease鈥濃�攁nd their families.
鈥淭o put it in perspective, I鈥檇 ask any parent if they could imagine a diaper change resulting in a fractured bone,鈥� says Argerie. 鈥淭his is the reality for children with OI and their families, and we wanted to offer others forms of support beyond their much-needed orthopedic, surgical and pharmaceutical interventions to make a difference in quality of life,鈥� she says.
Argerie and her research team鈥檚 approach to OI research is collaborative, interprofessional and global in scope, and seeks to provide children, families and clinicians with an active role in co-designing and creating meaningful tools to improve their quality of life. Specifically, Argerie鈥檚 work has translated into the development of four programs, each providing inspiring messages to help children with OI and their families 鈥榖ounce back鈥�, foster resilience, and showcase the remarkable talents of the OI community to the world.
Among these programs, the creation of the fiction novel 鈥淭he Dream Machine,鈥濃�攄eveloped by freelance writer in partnership with Argerie and the OI community鈥攖ells the story of Ashling, a 16-year-old with OI, who helps聽her younger sister, Skylar, a ski-racing star, cope with her first fracture.
鈥淪isom OI鈥澛�(鈥淪ISOM鈥� is a Norwegian acronym derived from the saying 鈥淪i聽det聽som聽det聽er鈥� meaning 鈥淪ay it like it is鈥�) is an award winning, rigorously tested, interactive computerized tool that helps children with cancer express their symptoms to adults. Argerie and direct-entry master鈥檚 student Maia Siedlikowski are co-designing and creating Sisom OI with Norwegian partner and inventor , with the goal of offering children with OI a way to actively engage in their health care. 聽
Argerie鈥檚 research team is also developing a program for youth with OI, targeting the need for educational, self-management and social support components. She is also working towards launching a spring art exhibit to showcase children鈥檚 experiences with OI. This project is currently in progress in collaboration with VOICE鈥攍ed by ISoN professor Franco Carnevale鈥� and 鈥攃o-led by Eric Lewis and Sheetal Lodhia.
鈥淭here is a vibrant and resilient OI community across the globe,鈥� says Argerie. 鈥淲e will continue to work towards better health outcomes for these children and their families, so that they have tools to help them live as well as possible.鈥�
Alongside her role as Assistant Professor at the ISoN, Argerie holds a scientific appointment at (SHC-Canada); a non-for-profit pediatric orthopedic hospital internationally acclaimed for establishing the worldwide standard of care for OI, pioneering the treatment, and testing its effectiveness. Argerie holds the first nursing scientific appointment within the 22-hospital network, which is generously supported with funds from the Newton Foundation, Tunis Shriners and Scotiabank庐.