Leaders by Experience: Representation matters
My name is Natalie and I'm the founder of the Black MS Foundation and #MyMSIsBlack. I'm a Londoner and mummy to my 7 year old son Rain.
I was diagnosed with relapsing remitting MS 11 years ago this year, and it's been a very challenging journey.
It's been a life changing experience that has forced me to make changes to enrich my life. It has encouraged me to make my journey more purposeful for myself, my child and for others going through a similar experience.
Why I wanted to take part in Leaders by Experience
Leaders by Experience is a progressive initiative. It focuses on marginalised groups in the MS community who feel not enough actionable work is being done to help them with their experiences with MS. That focus is what's needed to make sure no one has to face MS alone.
Being invited to take part, as a Black person with MS who is working to make a difference and bring our lives and stories to life, is exciting and humbling.
Shaping work to bring change
Representation is extremely important. People should be able to see themselves in a charity’s work.
If a charity is supposed to help people, but they're not visible in its mission, then it won’t be able to help them. This creates a disconnect with marginalised communities. I’m part of the Black community and I see this has unfortunately been the case.
No organisation working for the MS community can afford to see any disconnect with anyone living with the condition. Learning how to fix these things and directly involving marginalised communities to help shape that work, is a commendable start.
The change I want to see
I hope to increase awareness about MS and people living with MS within the Black community. Black people with MS have very unique experiences in every area from diagnosis to treatments.
I hope more awareness will prompt more research and action. From this will come more knowledge and more work to help us all live better with MS. And bring us closer to what we all want: a cure for MS.
