London, 24 January 2023: Medical research charity LifeArc, the Motor Neurone Disease Association (MND Association) and the My Name’5 Doddie Foundation have jointly awarded £1 million to researchers at University College London (UCL) to progress two pioneering new therapies that could help transform the lives of those living with motor neuron disease (MND).

The research grants are the first to be awarded as part of the £1.5 million Motor Neuron Disease Translational Fund, previously established by the three organisations to accelerate research that could lead to the development of new treatments or the repurposing of existing treatments for MND.

The two projects announced today are in the field of gene and cell therapy. The first project, led by Professor Pietro Fratta of UCL Queen Square Institute of Neurology together with the Nucleic Acid Therapy Accelerator (NATA), aims to develop a gene therapy for amyotrophic lateral sclerosis (ALS), also known as MND. Using antisense oligonucleotides (ASOs), designed to rescue a specific gene lost during disease, the researchers hope to slow down, stop or reverse disease progression in ALS patients.

The second project, led by Dr Barney Bryson and Professor Linda Greensmith of UCL Queen Square Institute of Neurology, explores an innovative treatment that has the potential to restore lost muscle function and prevent further muscle wastage in MND patients. The team’s unique therapeutic strategy involves injecting light-sensitive motor neurons derived from genetically modified human adult stem cells into nerves that control muscles in the limbs, hopefully restoring function of the paralysed muscles in response to pulses of light.

Dr Catriona Crombie, who leads LifeArc’s Philanthropic Fund which funds research to advance new treatments and tests for rare diseases, said: “Recent advances in our understanding of MND biology are opening up significant opportunities for new treatments. These research projects announced today have a clear path for reaching the later stages of the drug development process, offering the hope of effective new treatments for this devastating condition.”



Dr Brian Dickie, Director of Research at the MND Association, said: “People with MND and their families consistently tell us that investing in research is their top priority, so we’re delighted to be able to channel funds from our supporters directly into these two exciting projects. The MND Association supported the initial scientific studies in the labs of Professor Fratta and Dr Bryson which have led to these grants, and we are thrilled to see their discoveries being applied to new, potential approaches to treatment. Our hope is that through collaboration, continuing public support and investment in cutting-edge therapies, we will find solutions to unpick the complex nature of MND and lead to an effective treatment.”

Sean McGrath, Medical Strategy Lead at the My Name’5 Doddie Foundation, said: “We’re fortunate to have exceptional researchers in the UK making great strides in MND research, and these two projects are examples of important work in the field that we’re delighted to support. Translational research is critical as it focuses on moving lab discoveries to outcomes that can deliver real benefits for patients. This investment in MND research aligns with our strategy at My Name’5 Doddie Foundation and supports our commitment to giving hope to those living with MND.”

MND is a neurodegenerative disease affecting the nerve cells in 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. There are currently no treatments that can cure the condition; the only licensed drug for MND in the UK has a modest effect on extending life.

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Notes to editors

About LifeArc

LifeArc is a self-funded medical research charity. Our mission is to advance translation of early science into health care treatments or diagnostics that can be fully developed and made available to patients. We have been doing this for more than 25 years and our work has resulted in a diagnostic for antibiotic resistance and four licensed medicines.  Our success allows us to explore new approaches to stimulate and fund translation. We have our own drug discovery and diagnostics development facilities, supported by experts in technology transfer and intellectual property who also provide services to other organisations. Our model is built on collaboration, and we partner with a broad range of groups including medical research charities, research organisations, industry and academic scientists. We are motivated by patient need and scientific opportunity.

LifeArc has several different funding mechanisms to invest in promising innovations to ultimately benefit patients. Our Philanthropic Fund provides grants to support medical research projects focused on translating rare diseases research. Our Early Ventures investment team invests in seed and Series A stage companies and is able to scale our investments further into later funding rounds. The ventures strategy focuses on investing in novel translational science and technology with a dual goal of generating financial returns to the charity and positive impact for patients.

Find out more about our work on or follow us on LinkedIn or Twitter .

About the MND Association

Founded in 1979 by a group of volunteers, the MND Association focuses on improving access to care, supporting research and campaigning for those people living with or affected by MND in England, Wales and Northern Ireland. We are proud to take a leading role in the global fight against MND by funding ground-breaking research, facilitating collaboration, and raising vital awareness. The MND Association organises the International Symposium on ALS/MND, the largest medical and scientific conference on the disease, which attracts delegates from across the world to share the latest advances in research and treatment. At the end of May 2022, the MND Association had research grants portfolio consisting of 88 grants with a total commitment of £16.2 million, involving 185 researchers.

For more information, please visit or contact us at

About My Name’5 Doddie Foundation

My Name’5 Doddie Foundation has a clear vision of a world free of motor neuron disease. The charity was established by Doddie Weir and the trustees in November 2017 following Doddie’s diagnosis with MND. It was founded in response to his frustration at the lack of options given to MND patients – no effective treatment, no access to meaningful clinical trials and no hope.

The aims of the Foundation are simple:

To raise funds to aid research into the causes of MND and investigate potential cures.

To make grants to individuals suffering from MND, to enable them to live as fulfilled a life as possible.

For more information, please visit or contact us on

Connect with us on social media:

Twitter: @MNDoddie5

Instagram: @myname5doddie

Facebook: MNDoddie5

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