MS Awareness Week 2024

Blogs, News

This week we mark MS Awareness Week 2024 (22 – 28 April). Multiple Sclerosis (MS) is a neurological condition which is estimated to affect more than 130,000 people in the UK (MS Society). This week is a chance for those within the MS community to unite, share the realities of life with MS, and raise awareness of the condition.

The UK MS Register exists to increase the understanding of what it’s like to live with MS in the UK. We collect information directly from people with MS through online questionnaires, and also collect data from the NHS. This data is then used for research into many aspects of MS.

We have published papers on the implications of age of MS onset, smoking and MS, education levels and access to DMTs (treatments), the impact of COVID on people with MS, and much more. For a full list of our publications, follow this link.

We wanted to take the opportunity of MS Awareness week to highlight some of the amazing people involved in the UK MS Register and to encourage more people with MS to sign up and start sharing their experiences!

Dr Rod Middleton: Rod is an Associate Professor of Disease Registers within the

Population Data Science team at Swansea University, and also the PI of the UK MS Register. Rod initially began his career as an ITU Nurse but has always been interested in health research. Through his work with the Register, Rod has helped establish an extremely rich bank of MS data with huge potential for research which could one day answer the key questions about MS in the UK.

“Whilst nursing, I recognised the importance of research in almost every patient interaction, especially when impactful research could be reviewed and taken into practice quickly. By working on the MS Register I think I’m still trying to help patients get better at the end of the day – I can hopefully help more than one at a time now.”

Trishna Bharadia: Trishna is an award-winning health advocate and patient engagement consultant. In addition, she is an MS Society Ambassador, and also a long-time participant of the UK MS Register following her own diagnosis in 2008.

“I’m signed up for the MS Register because I know how important it is to understand MS in diverse communities. It’s simple, easy and I am contributing to better knowledge of the condition for myself, the MS community, and future generations.”

Sarah Knowles: Sarah is a research analyst who joined the UK MS Register team in 2022. Prior to working with the Register, Sarah helped co-ordinate clinical trials and academic studies at Imperial College NHS hospital sites in London. She completed her undergraduate course in Neuroscience and Psychology in 2016, and more recently completed an MSc in Neuroimaging for Clinical and Cognitive Neuroscience at the University of Manchester with a research project looking at MS.

Sarah recently had a paper published which looks at MS when it develops in older adults compared to younger adults. The paper, published in the prestigious peer-reviewed medical journal Annals of Neurology found that MS looks different when it develops in the later stages of life. Read more here.

When asked why she chose to work in MS research, Sarah said:

“For years I’ve been interested in how the brain works and in trying to understand how we can fix things when they go wrong in illnesses like MS. Any contribution I can make, no matter how small, into understanding more about the disease and making a difference to people’s lives is hugely rewarding.”

Dominic Shadbolt:

Dominic was diagnosed with Multiple Sclerosis (MS) in 1994. He has gone on to found the YouTube channel and podcast ‘The MS Guide’, a highly successful patient-to-patient resource.

“As someone who has lived with MS for 31 years it’s great to know that by contributing my data to the UK MS Register it helps me manage my condition and, more importantly, is giving back to the patient community as researchers search for a cure.  It’s only through MS patients sharing our data that incredible research breakthroughs can happen. Do it for yourself and do it for others. It is painless and anonymous.’


To mark this week the MS Society are teaming up with MS Together, the MS Trust, MS-UK, the Neuro Therapy Network, Shift.ms and Overcoming MS. Together, they’ll be launching MS Unfiltered – a campaign which will shine a light on the MS topics that can feel difficult to talk about from bladder control and sexual dysfunction, to navigating menopause and cultural stigma. Read more here.

The MS Society Living Well Team are also hosting an MS Awareness Week Webinar on Wednesday 24th April with MS Nurses from the Helpline. Speakers include ‘Talks with MS’ founder Terri-Louise Brown, and Amy Thompson founder of ‘MS Together’. Register here.

For more information on the UK MS Register, including how to sign up, please visit: ukmsregister.org