Natalie Busari was diagnosed with relapsing-remitting multiple sclerosis in 2016. Known for her advocacy work through “The Nerve of My Multiple Sclerosis,” Natalie highlights challenges faced by the Black MS community. She has been vocal about the need for greater visibility and support within the MS community. In this blog, she shares her experiences at the recent ECTRIMS conference and how she wants to encourage more diversity at events like these.
Attending the ECTRIMS conference in Denmark was a transformative experience for me, one that I'd nearly have missed without the support of Merck Pharmaceuticals. I was acutely aware of the underrepresentation of Black individuals at such events and so was keen to attend to see for myself.
Historically, conferences like this haven’t prioritised patient perspectives, and it wasn't until 2019 that they began hosting dedicated patient community days. This year felt different; I sensed a growing recognition of the importance of patient voices.
The new president of ECTRIMS encouraged us to look around the room on patient community day and feel proud of how far we’ve come as a community. With inspiring figures like Dr. Mitzi Williams, a neurologist and MS specialist based in the US, and Victoria Braithwaite, the founder of We Are ILL supporting Black women with MS, leading the way, I felt uplifted and supported. I brought my ambassador neurologist and a few of the team members along, but it still felt strange to be in a space where there were few familiar faces.
However, any discomfort quickly faded as I immersed myself in the vibrant atmosphere. It was a celebration of multiple sclerosis (MS), free from the stigma that often surrounds it.