MND Scotland is marking Global MND Awareness Day on Friday, 21 June by highlighting that, 10 years on from the viral phenomenon that was the ice bucket challenge, the motor neuron disease (MND) community still needs help to fund ground-breaking research into effective treatments and a cure.
In 2014, the ice bucket challenge grew organically to raise a phenomenal $220m globally with 28 million videos uploaded in 159 countries.
£500,000 was raised for MND Scotland, which has been used to fund research and support people in Scotland living with MND.
MND is a rapidly progressing terminal illness, which stops signals from the brain reaching the muscles. This may cause someone to lose the ability to walk, talk, eat, drink or breathe.
Rachel Maitland, CEO of MND Scotlandsaid: “Awareness of motor neuron disease has never been higher. The ice bucket challenge no doubt played a part in bringing MND to the forefront 10 years ago but we need to keep up the momentum, so everyone knows what MND is, and how brutal the disease is for those who are diagnosed.
“As a charity dedicated to supporting people with MND, and giving them hope by funding vital research, we endeavour to raise awareness every day. But Global MND Awareness Day is an opportunity to highlight that people with MND still need support. And we need to fund research to find effective treatments and a cure.”
Jim Maxwell was diagnosed with MND in February 2020 following the onset of symptoms, including twitching. He lives in Edinburgh and has two daughters. Jim said: “Ten years ago I took on the ice bucket challenge because I was nominated on Facebook.
“I didn’t know what it was raising money for, or what MND was. Ironically, six years later I was diagnosed with the disease. While living with MND is challenging, I want to do everything I can to raise awareness of the disease and improve understanding of how it impacts people.”
This year, MND Scotland is supporting a range of activities to remember the ice bucket challenge and raise vital funds.
One supporter, Greg Proctor (top), is taking on a daily ice bucket throughout 2024 in memory of his dad who passed away from MND. Last month, MND Scotland ran a Dip a Day in May fundraiser with supporters taking on a daily cold-water challenge.
Over the summer, we will be asking everyone to share their videos and text ICED to 70085 to donate £10.
Support MND Scotland’s ice bucket fundraising by visiting our website, or on Just Giving.
· £4.25 million research grant has been awarded that seeks that seeks to discover meaningful MND treatments within years, not decades
· Grant awarded by charities LifeArc, MND Association, My Name’5 Doddie Foundation and MND Scotland, together with government research organisations Medical Research Council (MRC) and National Institute for Health and Care Research (NIHR)
· Funding awarded to researchers from King’s College London, University of Sheffield, University of Liverpool, University College London, University of Oxford and University of Edinburgh to establish a new UK-wide motor neuron disease (MND) research partnership to address problems hindering progress
· Funding is a springboard for the MND community to develop plans for further ambitious and large-scale research projects, attract significant investment for MND, and encourage more centres to join the scientific mission to find treatments and ultimately a cure for MND
· Generosity and fundraising efforts of charity supporters have played a big part in making this partnership a reality.
Global MND Awareness Day: A group of charities and government research organisations has awarded £4.25 million to MND experts at six UK universities to kick start collaborative efforts to end motor neuron disease (MND).
This new ‘MND Collaborative Partnership’ brings together people living with MND, charities LifeArc, MND Association, MND Scotland and My Name’5 Doddie Foundation, government bodies Medical Research Council (MRC) and National Institute for Health and Care Research (NIHR),with researchers from King’s College London, University of Sheffield, University of Liverpool, University College London, University of Oxford and University of Edinburgh.
The partnership team will work together to find solutions to address problems currently hindering MND research and seeks to discover meaningful treatments within years, not decades.
Members of this new UK-wide MND research partnership will work together and pool their expertise over three years to:
coordinate research effort and deliver maximum impact for people with MND
develop better tests to measure MND progression and that allow doctors to compare different drugs
improve MND registers so doctors can collect detailed, high-quality data about the disease, and understand which patients are most likely to respond to a particular drug and therefore recommend them for the trials most likely to benefit them
support people to take part in clinical trials more easily
develop more robust lab tests and models of disease to enable scientists to test theories about the disease and a pipeline of potential therapeutic agents that could ultimately be used as MND treatments.
They will also launch a major new study involving 1,000 people with MND from across the UK to better understand disease progression and how people respond to new and existing treatments.
MND (also known as amyotrophic lateral sclerosis, or ALS) is a devastating neurodegenerative disease affecting the brain and spinal cord. People progressively lose nearly all voluntary movement and need complex care, and around half of those diagnosed die within two years.
Six people are diagnosed with MND every day in the UK and the condition affects around 330,000 across the world. One person in every 300 will develop MND. The only licensed drug for MND in the UK has a modest effect on extending life – but no treatments are available that can substantially modify disease or cure the condition.
Professor Ammar Al-Chalabi, co-director of the research programme and Professor of Neurology and Complex Disease Genetics at King’s College London and Director of King’s MND Care and Research Centresaid: “Our goal is to discover meaningful MND treatments within years, not decades. This landmark funding will bring the UK’s major MND research centres together for the first time in a coordinated national effort to find a cure.
“We now have a much better understanding of MND, so we must take this opportunity to accelerate development of new treatments and work together to move this knowledge into the clinic and help people affected by this devastating disease.”
Dr Catriona Crombie of LifeArc, the charity which has coordinated efforts from all funders to deliver this landmark MND Collaborative Partnership, said: “Over recent years, scientists have made great progress in MND, and this has opened up several promising avenues that could ultimately make a difference to patients.
“But there are some barriers hindering progress. For the first time, the MND community – that’s patients, funders, scientists and doctors – have come together to work out the problems and plan a way forward. As funders we are really excited at what this exceptional group of people could achieve for those affected with MND.”
David Setters, who is living with MND and has been involved in shaping the partnership said:“We welcome this collaboration, which paves the way for the £50 million government investment promised in November 2021, focused on making the first meaningful treatments for MND available within years, instead of decades.
“It brings real hope to those of us living with MND to see our leading neuroscientists and charities coming together in this way. The prospect of easier access to clinical trials and the most promising therapies being fast-tracked gives us a much-needed boost and brings a real sense of purpose to the community.”
Professor Christopher McDermott, one of the co-directors of the research programme and Professor of Translational Neurology at the Sheffield Institute for Translational Neuroscience (SITraN)said: “We believe that by combining and coordinating our expertise, we will be more effective than if we work on projects in isolation.
“This partnership will provide the infrastructure to attract additional MND funding and enable further MND centres and researchers to join forces in the national effort to find effective treatments for MND. The partnership is the first step towards our goal to establish a national MND institute.”
Health and Social Care Secretary Sajid Javid said:“Motor neuron disease has a devastating impact on those who are diagnosed, their families and loved ones – but there is hope.
“This new partnership is a highly ambitious approach which will drive progress in MND research and, backed by £1 million of government funding, will bring the MND research community together to work on speeding up the development of new treatments.The collaboration across government, charities, researchers, industry and people with MND and their families will take us one step closer to one day achieving a world free from MND.”
The Partnership was formed in 2021 to coordinate and pool funding for research into MND to speed up progress and help research to move towards the clinic and ultimately reach patients faster.
Funding for the MND Collaborative Partnership research grant totals £4.25 million and contributions are as follows: LifeArc (£1 million), MND Association (£1 million), My Name’5 Doddie Foundation (£1 million), MND Scotland (£250,000), Medical Research Council (MRC) (£500,000) and National Institute for Health and Care Research (NIHR) (£500,000).
