Research investigating potential treatments for motor neurone disease (MND) has secured a further funding boost, bolstered by the marathon fund-raising efforts of Leeds Rhinos’ rugby coach Kevin Sinfield.

Last month, the former rugby league player and the Motor Neurone Disease Association announced that £500,000 of the money he raised, inspired by his team-mate and friend Rob Burrow, would be ring-fenced by the charity for research into the terminal illness.

Now, medical research charity LifeArc has pledged to match that amount, creating a £1m fund dedicated to stimulating research into practical treatments. The money will be targeted at research teams whose work is clearly focused on developing effective treatments. Researchers have until mid-June to apply for support from the fund.

Kevin, who is now Leeds Rhinos’ director of rugby after a long career playing with the club, said: “This is fantastic news and an amazing contribution from LifeArc. When we set out to complete the 7 in 7 Challenge we hoped to raise awareness and funds to support the MND community but it is wonderful to see the inspiration it has given people and organisations, like LifeArc, so they too can support the need for more research.

“We have seen over the last year the vital work that can be done by researchers and scientists when they are given the resources they need. MND is not incurable, it has just been underfunded and our hope – like that of everyone affected by this brutal disease including Rob – is that this money will make a real difference and help find the breakthrough we all desperately want.”

Recent advances in scientific understanding of the mechanics of MND provide new opportunities in the search for an effective treatment. MND attacks the nerves that control movement so muscles no longer work and can leave people locked in a failing body, unable to move, talk and eventually breathe. Every day in the UK six people are diagnosed with the disease – half will die within two years of diagnosis.

The £1m joint fund established by the MND Association and LifeArc will support research projects focused on developing new treatments or repurposing drugs that are already approved to treat other conditions. A key element of the selection process is that projects set out a clear path to reaching the later stages of the drug development process. Each organisation is contributing £500,000 to the fund.

Dr Brian Dickie, Director of Research Development at the MND Association said: “Our understanding of the causes of MND has improved dramatically over the last two decades but clinicians are still unable to offer their patients any truly effective treatments. We have to turn this new knowledge into potential new treatments if we are to offer people with the condition and their families real hope.

“We are so grateful to LifeArc for this generous contribution and are looking forward to working with them to identify projects which have a real chance of making a difference to our community in the coming years.

Dr Melanie Lee, CBE and LifeArc’s chief executive officer, emphasised that the focus of the new funding is on boosting research around potential treatment options based on the latest understanding of the disease. She said: “The ambition around stimulating the search for new treatments fits with LifeArc’s approach over the past 25 years to translate early science into health care treatments or diagnostics that can transform patients’ lives.

“The fund will help to bridge the gap between fundamental research into MND disease mechanisms and the search for practical treatments, facilitating translation of ideas into tangible products. Our partnership with the MND Association is the latest in a series of strategic partnerships that maximise LifeArc’s expertise in translating strong discoveries from the lab into benefitting patients with conditions with few or no effective treatment options.”

The fund will support teams that are working on:

  • developing candidate therapeutics (e.g. drug discovery)
  • pre-clinical testing of new therapeutics
  • pre-clinical validation for existing treatments that could be repurposed for MND
  • early-phase clinical trials of new therapeutics
  • early-phase clinical trials of existing treatments repurposed for MND.

Successful projects will be expected to conclude within three years and be target-driven with set milestones and a credible delivery plan – including a clear route to reach MND patients.

Noting that the Association’s contribution is part of the money raised by Kevin’s marathon efforts last winter, Dr Dickie said: “Everybody who heard about Kevin’s magnificent effort on behalf of his mate and teammate, Rob, was so moved. Just months later his efforts are building hope in the most practical way for thousands of people affected by this devastating condition.” 

For further information please see the LifeArc & MND Association Translational Research Fund page.

-ENDS-

Media contacts

Suzanne Ostler
Communications Manager
MND Association 01604 611838
communications@mndassociation.org

Surinder Maan
Communications Manager
LifeArc
mediaoffice@lifearc.org

Notes to editors

Trade press release

LifeArc and MND Association establish joint fund to inject momentum into search for potential motor neurone disease treatments   

11 May, 2021:-Teams working on research that could translate into treatments for Motor Neurone Disease (MND) can bid for support from a new £1m joint fund. 

Medical research charity LifeArc and the MND Association have established the joint translational research fund to support researchers to develop treatments for MND building on recent advances in understanding the mechanics of the disease. Despite those advances, there is still no effective clinical treatment for MND.  

Researchers from across the UK and the Republic of Ireland can seek grants of up to £500,000 as funding for translational research projects focused on developing new therapies or repurposing existing treatments for MND.  

Each organisation is contributing £500,000 to the fund. The MND Association’s share is part of the £2.2m raised by Kevin Sinfield of rugby league club Leeds Rhinos. He ran seven marathons in seven days last December – inspired by former teammate Rob Burrow, who was diagnosed with MND a year earlier. 

Dr Brian Dickie, Director of Research Development at the MND Association, said: “Our understanding of the causes of this devastating degenerative condition has improved dramatically over the last two decades, but clinicians are still unable to offer their patients any truly effective treatments. These advances have driven MND to the forefront of neurological disease research and we want to capitalise on that momentum. The research we are seeking to fund will build on that enhanced basic scientific understanding to develop potential therapies. That is how we can begin to offer real hope to people with the condition and their families.” 

Dr Catriona Crombie, Head of LifeArc’s Philanthropic Fund, emphasised that the focus of the new fund is on boosting research that already has a strong scientific foundation backed by credible data.  

She said: “This work fits with LifeArc’s approach over the last 25 years to translate early science into health care treatments or diagnostics that can transform patients’ lives.  

“The fund will plug the gap between fundamental research into MND disease mechanisms and possible treatment options reflecting advances in our understanding of those mechanisms. This is about stimulating the search for effective treatments: now that scientists understand the mechanisms of the disease, they can build on that knowledge to identify and eventually test potential practical treatment approaches.” 

“Our partnership with the MND Association is the latest in a series of strategic collaborations that leverage LifeArc’s expertise in driving strong discoveries from the lab into benefitting patients with conditions that have no or few effective treatment options.” 

The fund will therefore support teams that are working on:  

  • developing candidate therapeutic entities (e.g. small molecule drugs, antibody drugs or gene therapies) 
  • pre-clinical testing of novel therapeutics in vitro or in vivo 
  • pre-clinical validation for existing therapeutics that could be repurposed for MND 
  • early-phase clinical trials (phase 1/2) of novel therapeutic compounds 
  • early-phase clinical trials of existing therapeutics repurposed for MND

Kevin Sinfield, who is now Leeds Rhinos’ director of rugby after a long playing career with the club, said: “This is fantastic news and an amazing contribution from LifeArc. When we set out to complete the 7 in 7 Challenge we hoped to raise awareness and funds to support the MND community but it is wonderful to see the inspiration it has given people and organisations, like LifeArc, so they too can support the need for more research.  

“We have seen over the last year the vital work that can be done by researchers and scientists when they are given the vital resources they need. MND is not incurable; it  has just been underfunded and our hope, like that of everyone affected by this brutal disease including Rob, is that this money will make a real difference and help find the breakthrough we all desperately want.” 

Successful projects will be expected to have a strong scientific rationale, be up to three years in duration and be target-driven with set milestones and a credible delivery plan – including a clear route to reach MND patients. Applicants should note that funding will be milestoned and subject to the achievement of those corresponding milestones. 

Researchers interested in applying for funding should register to join an online webinar by 11am on 24th May. The webinar will take place on 25th May and it will give researchers the opportunity to learn more about the scheme and the application process. Researchers must register interest and provide a brief summary of their proposal via LifeArc’s website by 18:00 (UK time) on 10th June.  

Suitable applicants will be invited to take part in a 1-1 discussion about their proposal by the end of June/early July and to submit a full application by 4pm on 27th August. The two organisations will make funding decisions in December. 


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 taken through to full development 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.

Two funds help us to invest in external projects for the benefit of patients: our Philanthropic Fund provides grants to support medical research projects focused on the translation of rare diseases research and our Seed Fund is aimed at start-up companies focused on developing new therapeutics and biological modalities.

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About the MND Association

The MND Association focuses on improving access to care, research and campaigning for those people living with and affected by MND in England, Wales and Northern Ireland.

Find out more at www.mndassociation.org