Long read: The mission to Stop MS

In the last 20 years MS research has reached a crucial point in finding medication that can slow, stop or reverse the effects of the condition. Here, the MS Society speaks to Enable about the quest to Stop MS and the innovative research they believe will make it possible.

It is estimated that more than 130,000 people in the UK have multiple sclerosis (MS), a condition that affects the brain and spinal cord and makes it harder to do everyday things, like walk, talk, eat and think.

Credit: @MSSocietyUK on Twitter

With nearly 7,000 people newly diagnosed each year, finding effective treatments for MS is paramount for charities like the MS Society.

“As an organisation one of our priorities is to increase availability of treatments that slow, stop and reverse the effects of MS,” explains Dr Susan Kohlhaas, executive director of research and external affairs at the MS Society.

Breakthrough

Currently, it can take around 17 years for a new drug to be created, tested, approved and made available to patients, but this wait is too long to make a difference for people who are being diagnosed with MS today.

“People with MS told us what they want us to do,” explains Susan. “It was really finding ways to stop MS and stop the progression of the disease, another is preventing MS.

“We’re doing work on understanding what the risk factors are, how they interplay, and how we evaluate strategies to prevent MS.”

Through the charity’s Stop MS campaign and strategic investments in research, the MS Society hope to speed up this process.

“We’re primed to unlock a breakthrough in treatments and care,” reveals Susan. “What we’re trying to do through our Stop MS appeal is to speed that up as much as possible, the investment in research has already identified a number of molecules or drugs ready to be tested in clinical trials.”

Through this research all possible avenues are being explored, including using repurposed drugs which are often available for other conditions.

There are multiple treatments for the symptoms of MS available on the NHS now, but the condition effects each person differently and symptoms are varied. Treatment isn’t one size fits all and research breakthroughs are vital to ensuring there is treatment for everyone.

MS Awareness week takes place from 20 to 26 April 2020

Technology

Technology has become an essential resource in research, opening doors to treatments that haven’t been possible before. In 2019 the MS Society committed to investing £1.3million to fund 13 new technology projects, all pushing the boundaries of MS research.

“This year we have some amazing projects,” enthuses Susan. “We’ve got a really exciting one in Sheffield that is looking at using robotic suits to help people with MS with mobility issues, helping people to stay physically active, it’s really exciting.

“It’s fantastic to be able to fund and work with the future of technology and what it might be like for people with MS.”

A number of symptoms of MS can be helped by existing technology and new developments, and technology can often speed up how quickly these outcomes are achieved.

“Other things technology can do is it can help people day to day,” explains Susan.

“There’s all sorts of different apps and technology that can help people in the here and now that don’t need a large-scale research programme.”

Data and technology have become a large area of focus for the MS Society, with planning underway for the first data and technology summit later this year. The summit will explore the most exciting things happening in the industry right now and how they can be used to benefit the MS community.

Investment

As part of the mission to Stop MS, the MS Society have made the charity’s largest single investment in an initiative to build a large-scale clinical trial platform.

“We know we need new treatments ASAP so we are bringing the research community together to help us tackle the issue through clinical trial work,” explains Susan. “It will help us to streamline clinical trials to make them faster, and smarter, to ensure we are using the data we have from clinical trials to the best of our ability.”

Susan believes that this platform could transform MS treatment. Working with researchers from across the world, the project aims to speed up the process for discovering new treatments.

The platform could make it possible to test multiple drugs at the same time without having to stop and start between trials. “Beyond that we are going to be continuing to invest in high quality research that helps address our priorities and understanding MS,” adds Susan.

Get involved

Without the input and time of people with MS, this research wouldn’t be possible, Susan says: “This is the most exciting time I’ve ever seen in MS research, and we can see a future where nobody needs to worry about MS getting worse. But we can only do it together, and there are lots of ways people with MS can get involved.”

People with MS, their loved ones and the wider community can help by volunteering and raising money for research, or people with MS can take part in clinical trials.

“One of the key things they can do is join the UK MS Register,” explains Susan. “The register is a great gateway to promoting clinical trials and research, we’re also encouraging people to join #TeamStopMS – this can involve anything from spreading the word on social media to raising vital funds.”

With MS Awareness Week taking place from 20 to 26 April, the momentum behind this research is only growing. Providing a voice for the MS community while giving them a sense of belonging, MS Awareness Week will work to raise awareness and crucial funds to continue life-saving research to stop MS.

Discover the latest MS research at from the MS Society or the UK MS Register.

How are you involved with the mission to Stop MS? Share your experience with the #EnableCommunity on Twitter and Instagram.