The Need for Speed in MND research and how we’re stepping up the pace

In tune with this week’s Doddie Aid theme “Need for Speed”, we recognise the need to make progress in MND research quicker than ever before. In the UK, there is one treatment approved for MND and that was approved in the mid-1990’s. Our founder, Doddie Weir OBE, set up the Foundation in response to his frustration about the lack of options, progress and hope for people living with MND, and we remain true to delivering on his legacy to change that.

Our understanding of the disease process has improved dramatically in recent years, but we now need to translate this understanding into the clinic, so that people living with MND benefit. This ‘translational’ space is where we have positioned our Research Strategy, Catalysing a Cure, that we launched last year. The strategy outlines how we can play a role in bringing new, effective treatments to people living with MND, quicker.

Alongside our Research Strategy, last year we launched our first competitive grant scheme, to identify and fund the most promising research to develop new and innovative treatments for MND. Applications are rigorously reviewed by members of our Research Review Committee (RRC), an independent group of experts from academia, industry and people affected by MND. Olivia Bird, Research Programme Manager at the Foundation, manages this process and works closely with our RRC to ensure that decisions are made fairly and efficiently. She said “The members of our RRC are completely on board with what we are trying to achieve at the Foundation and work extremely hard to review projects as thoroughly and as efficiently as possible. They are absolutely crucial to helping us deliver on our Research Strategy and provide our supporters with confidence that we are only funding the very best projects.”

“The Foundation has a desire to do things differently, quickly, more flexibly and to be responsive, identifying and filling the gaps” - Dr Richard Mead, Research Review Committee Chair

In addition to conducting our research funding activities as quickly and as efficiently as possible, many of the projects we fund are also aiming to accelerate our search for a cure. For example, we are funding a first-of-its-kind clinical study led by the University of Oxford and the University of Edinburgh. The study is aiming to rapidly assess whether a drug used for other conditions, terazosin, could be effective in MND. The drug will be given to 50 people living with MND for up to six months and a blood-based biomarker will be assessed to identify whether the drug is having an effect. This new kind of study will allow us to identify whether a drug holds promise for the treatment of MND more rapidly, and help us to prioritise which drugs should go into larger, more expensive and more time-consuming clinical trials.

Jessica Lee, Director of Research at the Foundation said “Studies like the TRUST trial are exactly what is needed to accelerate the pace of MND research and bring us closer to new treatments for MND, quicker. We’re always looking for smarter, more efficient ways to conduct MND research and the TRUST trial is the perfect example of that.”

We recognise that people living with MND do not have time to wait, and the impact of our supporters clocking up their miles for Doddie Aid to help us achieve our vision can not be underestimated. We will continue to ensure that the research we fund will make a difference to people living with MND in years, not decades.