“My GP didn’t know; my neurologist thought I shouldn’t know; the books in the library were out of date; the internet didn’t exist. I couldn’t access the information I wanted because I wasn’t a doctor, but without medical training I couldn’t understand it anyway. We were told: ‘You’ve got MS; go home and learn to live with it’.”
These are the memories of MS Trust co-founder and Letchworth local Chris Jones, who was diagnosed with multiple sclerosis in the 80s. For Chris, and the thousands of other people living with the condition around that time, the landscape was bleak. The information available about MS was woefully inadequate; MS research was underfunded; specialist MS health professionals were few and far between, and the image of MS was often unduly negative.
In 1993, Chris and her good friend Jill Holt, whose mum had MS, decided enough was enough. Together they founded a small charitable trust to provide information, support and, perhaps most importantly of all, hope, to those people feeling like they had nowhere and no one to turn to. That charity was the MS Trust.
Over 25 years later, the MS Trust is still going strong. Based at the famous Spirella building, it’s a small charity making a big difference for the 130,000 people living with MS in the UK. An MS diagnosis can be devastating, for those with the condition and their loved-ones. The MS Trust is there for people with MS from the moment of diagnosis, and throughout their journey, providing the vital information and support they need to live a life with MS, not a life defined by MS.
In these uncertain times, that support is more crucial than ever. Since the coronavirus outbreak, more people than ever before have been contacting the MS Trust’s Enquiry Service, searching for answers. They are scared. Scared about what the coronavirus means for them. Scared because they can’t access their usual MS service. Scared about isolation and not seeing their family. Scared that their treatment will be delayed. Scared of what the future holds. People living with MS are facing truly difficult situations and our priority remains providing support to all those who need us. Today, tomorrow and every day after.
But we need your help to be able to do that. The MS Trust receives no government or NHS funding. Around 80p in every pound we spend every year comes from traditional fundraising like skydives and cake sales and lockdown stopped them almost overnight in one of the busiest fundraising periods of the year. We’ve launched an emergency appeal to help us keep going through the coronavirus and beyond.
If you’re able to support the appeal, please do make a donation at www.mstrust.org.uk/ms-doesnt-stop.
You can find out about other ways to support our work at www.mstrust.org.uk/fundraising