"I want The Black MS Foundation to be a community resource for Black people with MS" says Natalie
Natalie, founder of The Black MS Foundation tells us about the inspiration behind her community organisation and Black MS awareness initiative.
“I’ve had MS for 12 years now. And if I was given a leaflet to The Black MS Foundation, it would’ve made me feel so much better knowing there were people like myself in my situation” says Natalie.
From her home in London, we spoke to Natalie about how her organisation wants to help raise more awareness. And unite people diagnosed with MS in the Black community and help them feel that they are seen.
The inspiration behind The Black MS Foundation
I started the Instagram page back in 2021, initially to find other black MSers like myself. Within the realms of my passion and social media I also came up with the hashtag #MyMSIsBlack. I wanted to show real Black people with MS in a way I’d never personally seen before.
It was essentially a mini ‘campaign' on social media. As well as the many people I already had messaging me daily about the page, I was now receiving messages from people asking if they could use the hashtag.
The website, mymsisblack.com, was launched this month. And I’m hoping it can be a resource of information for Black people with MS. And a space where they can be inspired by other stories like their own. Ultimately, if it makes just one person feel less alone with their diagnosis and MS journey, then it’s doing a great job!
Share your story with #MyMSIsBlack
I’ve had MS for 12 years. When I was diagnosed, the first organisation that I was referred to was Shift.MS, which is great for their community forum.
I was then referred to the MS Society. The information on the website was really good for the actual information about MS, but I never saw anyone like myself on the website. It made me feel like people like me don’t get MS. I couldn’t see myself.
I would go to a few community meetings and would obviously meet people with MS. But I was either the only Black person or one of few in attendance. In life, in all demographics, you naturally tend to gravitate towards people who are like you. But when you don’t see them it can feel isolating.
“I was extremely frustrated and just not happy with the lack of representation for people like me.”
I once saw a really big MS Society campaign on billboards, newspapers and magazines and even on TV. Seeing that was great but there wasn’t a single Black person on the ads. That really upset me. I felt I wanted to create some sort of change.
That spurred me on to find other people like myself with MS. So after setting up the group, I saw there were so many people like me! It was incredible.
A page that brings people together
From the very beginning, I knew I wanted to set up a page online to meet other people like me. I would get so many messages from people globally just saying thank you for setting up the page. I would often hear from family members who’d say they know someone who’s been diagnosed and ask for advice. I would always reply the same way “I’m not a doctor but speak to their GP for the best information.”
Our Instagram page has been very well received so far. We have over 1,000 followers. For other people, that might not seem like a lot but I’m really happy with the progress it’s made. To me, it's pretty amazing. 95% of the followers are Black people with MS which was my aim.
I just officially launched the website this month and I have a lot of key plans for what I’ll be doing with it. There are many organisations and individuals raising awareness of Black MS. And there has been much research done on the demographic. But the continued lack of effort to act on the findings of that research is the ongoing issue.
A look to the future
I want the Black MS Foundation to be a community resource for Black people with MS. I want it to be a hub of support for anyone who uses it. Especially in terms of socialising and meeting people to help people feel less alone.
