MND isn’t incurable, it’s underfunded

Recently former England rugby union captain Lewis Moody shocked the nation when he announced his motor neurone disease (MND) diagnosis. The story sparked enormous attention and heartfelt tributes to his courage. But it must also spark action.

While Lewis has announced his admirable intention of supporting a charity linked to MND, the ultimate question remains: how can this brutal disease be defeated for good?

Lewis’s diagnosis adds to a growing and deeply troubling trend. Elite athletes appear to be disproportionately affected by MND. Studies of professional footballers in Italy, for instance, suggest that the rate of the disease may be up to six times higher than in the general population.

Rugby and sporting legends such as Doddie Weir, Rob Burrow and now Lewis Moody have become public faces of this crisis.

Researchers are still working to understand why – whether it is oxidative stress from strenuous exercise causing damage to motor neurone cells or genetic predisposition – but one fact is undeniable: those who have dedicated their lives to strength and endurance are being affected in devastating numbers.

Motor neurone disease, a degenerative condition affecting the brain and nervous system, is often described as incurable. In truth, it is underfunded.

Global investment in life sciences has understandably prioritised cancer and cardiovascular disease. Between 2016 and 2023, cancer research received $51.4 billion while cardiovascular research grants reached $2.2 billion in 2022 alone.

By contrast, MND funding remains a fraction of that scale. The UK Government pledged £50 million in 2021 – a meaningful step but far from sufficient when compared to annual public funding for cancer (£125 million) and dementia (£105 million).

The gap is not reflective of the widespread and devastating impact of MND. In the UK, six people are diagnosed every day, with an estimated 268,000 individuals living with the condition worldwide.

These individuals, including many athletes and their families, are being failed by a lack of sustained investment. The result is painfully slow innovation: only one drug, Riluzole, has been approved in the UK for more than twenty years.

While existing treatments merely slow progression, true hope lies in the pursuit of therapies that halt or even reverse the disease.

Preclinical studies from Aclipse Therapeutics, a US-based biopharmaceutical company, have demonstrated such potential.

Its drug candidate, M102, developed in collaboration with researchers at the University of Sheffield, could not only stop the progression of MND but also restore damaged motor neurons – a prospect that would represent a profound medical breakthrough.

My company, Intellectual Digital Global (iDG), has funded and supported Aclipse Therapeutics since 2018 as part of our broader commitment to accelerating life sciences innovation.

Aclipse’s collaboration with Dame Pamela Shaw, Director of the Sheffield Institute for Translational Neuroscience, marks a pivotal moment for the field and for MND patients everywhere.

Speaking to Dame Pamela, she is adamant that science is catching up with the disease and that collaboration between academia and the private sector is vital if we are to turn promising discoveries into real treatments.

She argues that partnerships such as those between Sheffield University, Aclipse and iDG will enable us to translate years of laboratory research into clinical progress – and, most importantly, hope for people living with MND.

The UK has long been a world leader in life sciences research, with its universities driving breakthroughs from penicillin to the Oxford–AstraZeneca COVID-19 vaccine.

To unlock the next generation of discoveries, however, academia must be coupled with private-sector investment and international collaboration.

The partnership between Aclipse, the University of Sheffield and iDG is a case study in what can be achieved when science and capital align behind a shared mission.
The life sciences are often portrayed as a high-risk investment. Yet history shows the opposite.

When funding keeps pace with scientific understanding, innovation creates not only medical progress but also economic growth.

Every new therapy that slows, stops or reverses disease redefines how we value both life and investment.

Our sporting heroes embody resilience, teamwork and perseverance – the same qualities required to achieve medical breakthroughs.

When those very athletes are felled by MND, the loss reverberates far beyond sport. It touches something profoundly human: the will to fight back.

As the nation applauds Lewis Moody’s courage, we must honour it with commitment.

We owe it to him, to Rob Burrow, to Doddie Weir and to every person living with MND – whether celebrated on the field or unseen in everyday life – to bring the same determination, focus and collective spirit to this fight that they once brought to theirs.

MND is not incurable. It is underfunded. And with the right investment, collaboration and willpower, we can change that and transform lives for good. 

“MND robs people of their strength and independence with heartbreaking speed – often within just a few years of diagnosis.
Yet science is finally catching up with the disease. The work we have been doing at Sheffield has already been effective such as M102’s early promise of stopping progression of disease and reversal of cells to a healthier state.
The collaboration between academia and the private sector is vital if we are to turn promising discoveries into real treatments.
With partners such as Aclipse Therapeutics and iDG, we are now translating years of laboratory research into clinical progress – and, most importantly, hope for people living with MND.
There is no medical condition more worthy of strong support for the development of disease-modifying therapies, than MND.”