Embracing diversity at ECTRIMS: a call to action


22 October 2024

Smiling woman standing standing outside doors at ECTRIMS conference

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.

One of the highlights was seeing our own booth with our organisation’s name on it. It was a powerful moment of realisation about how far we’ve come as a Black-led organisation in a nonprofit village surrounded by others working tirelessly in the MS community. 

Our neighbours, the MS Register, are friends who shared our mission to increase Black representation in MS research—a cause close to my heart. It felt good having friends by my side.

I had the opportunity to connect with many neurologists and organisations eager to collaborate. The warmth and acceptance I felt made me realise that I belonged here.

Conversations flowed freely, and I learned so much from everyone I met. My presence at the conference wasn't just about representation; it was about fostering understanding and collaboration.

Moving forward, we must encourage more Black individuals to participate in these conferences. 

Many in the Black MS community were unaware of their existence or felt disconnected from them. To address this, we are launching "The Road to Barcelona," aimed at motivating more people from the Black community to attend the next conference in 2025. We want to share insights from our experiences and encourage attendance.

Increasing diversity at these events is crucial. The conference itself can take steps to partner with organisations like The Nerve Of My Multiple Sclerosis to enhance outreach and ensure that everyone feels included. After all, diverse representation leads to more comprehensive research and a better understanding of MS across all communities.

As we advocate for greater inclusivity, let’s remember that everyone—regardless of race or background—should engage in these vital conversations about MS research and care. 

Together, we can make a difference and ensure that no voice goes unheard

Find out more

For more information on diversity and MS, here are some other resources from the MS Trust.

Latest news & stories