"You Can't Let Go" - A Black Community Leader's Perspective on Engagement and Advocacy.

Abstract

Lanre Tunji-Ajayi is president and CEO of the Sickle Cell Awareness Group of Ontario (SCAGO). This charitable organization focuses on ameliorating the lives of those living with sickle cell disease by providing evidence-based support to patients and supporting clinical and psychosocial research, health promotion and the development of best practice guidelines. Lanre's passion for this work is personal. Following the death of her brother Sunday Afolabi from preventable and treatable complications of sickle cell disease, Lanre immersed herself in advocacy for community health and quality patient care. In this oral history narrative, Lanre reflects on her decades-long journey advocating for those living with sickle cell disease - a disease which disproportionately affects Black people. Her reflections focus acutely on the challenges she has faced in raising awareness and visibility, including through formal public engagement policy processes. Lanre also speaks to the personal costs she has encountered engaging in this advocacy work and the subtle and institutionalized forms of anti-Black racism that have punctuated this already difficult effort to bring about change.