Did you know that one in seven diagnosed with ovarian cancer each year die within two months after diagnosis? We are being failed. Enough is enough.
On Tuesday 28 June I am marching to No 10 Downing Street, alongside Target Ovarian Cancer campaigners, to hand in our open letter signed by 20,000 people. Together, we’re demanding the government takes action on the awareness crisis in ovarian cancer.
In 2019 I was working long hours in the City of London. With a daily commute, busy lifestyle and regularly visiting my sick mum, I was tired. But, like many women, I ignored this and continued on. Then one night, I felt a painful lump in my tummy. It was a tumour. I was later diagnosed with stage IIIa ovarian cancer.
For me, ovarian cancer affected my whole body. My right leg bloated due to deep vein thrombosis and a clot on my lung was discovered. I had intense surgery to drain my kidneys and remove the tumour, as well as a total hysterectomy and many other procedures. I then underwent six rounds of chemotherapy.
Ovarian cancer changed my life, and with no screening in place it is essential that we are all armed with awareness of symptoms. This means the cancer can be found earlier, and outcomes are significantly improved. No one should die because of a late diagnosis.
Four out of five women cannot name the key symptom of ovarian cancer, bloating. This needs to change.
I’m writing to ask your readers to take just two minutes of their time to learn the symptoms and spread the word to their families and friends: persistent bloating, feeling full or having difficulty eating, tummy pain, and needing to wee more often or more urgently.
Become part of this movement to make change happen in government today by campaigning to improve the lives of people affected by ovarian cancer.
With best wishes,
Catherine Hunt
Target Ovarian Cancer is the UK’s leading ovarian cancer charity. We work to improve early diagnosis, fund life-saving research and provide much-needed support to women with ovarian cancer https://targetovariancancer.org.uk
WITH the opening of some seriously swoon (eh? – Ed.)Edinburgh hotels, could it be argued nowhere in the country compares? If your favourite dwelling also knows its way around a delicious drinks menu, now is your chance to share their successes and help crown them top of the Scots.
There are just under two weeks left to enter Scotland’s longest-running licensed trade awards – dubbed the ‘hospitality Oscars’ – the Scottish Bar & Pub Awards 2022.
Back bigger and better this year, the prestigious annual event is looking for the best hotel establishment in YOUR area that deserves recognition for its stunning bar.
Have you been wowed by the views from the stunning Gleneagles Townhouse rooftop bar? Has the impressive Commons Club in the Virgin Hotel caressed your tastebuds with a cocktail offering? Or have the decadent surroundings of the House of Gods bar made you feel like royalty for the evening? Or about new cocktail speakeasy called Counter in Native Edinburgh? Well now is your chance to shout about it!
At the 27th annual event, category sponsors Old Tom Gin 1821 are looking to hear from staff, customers and community members who would like to see their much-loved Edinburgh establishment take home the coveted accolade.
Nominations are open until 30 June and establishments have the chance to be shortlisted across 18 amazing categories including the Benromach Whisky Bar of the Year, the Molinari Casual Dining Award or the Pernod Ricard Best Late Night Venue.
The Scottish capital impressed judges last year, with the manager of the Black Ivy, Tony Craig, triumphing in the bar manager of the year category. If one of your favourite bars has a staff member who goes beyond the call of duty, we would love to hear about them too.
The prestigious awards also look to celebrate rising stars in the industry, community-minded establishments and overall give a much-needed boost to those championing the late night economy.
New for 2022, The Molson Coors Scottish Bar of the year award will look to recognise operators that offer something special for their locals, or are full of exceptional teams that make the industry so vibrant and fresh.
Organiser, Susan Youngsaid: “Scotland has the best people and our awards are here to commend those charismatic individuals and their incredible venues that make up Scotland’s unparalleled hospitality landscape. But they need your help to vote for them. Reward the efforts of your favourite pub or bar and vote now on The Scottish Bar & Pub Awards website.”
To enter your local hotel bar into this year’s awards, simply vote online to cast your nomination. Every vote counts as the ten competitors with the most votes from each category will receive a visit from ‘mystery shoppers’ before the finalists are revealed.
Following a judging process, the winners will then be announced at a glittering award ceremony on 30th August 2022 at The Hilton Hotel, in Glasgow.
Nominations are now open across Scotland for The Scottish Bar & Pub Awards 2022. Voting closes on the 30th June 2022.
Obviously a pub that welcomes dogs… with great facilities and perhaps even treats for their four-legged customers.
ARO Procurement Customer Service Award
Judges will be looking for a pub, restaurant or hotel which fully embraces the customer service ethos.
Benromach Whisky Bar of the Year
Gordon & MacPhail, one of Scotland’s premiere whisky companies, is looking for a whisky bar that excels and has a great range.
Buzzworks and Montpeliers Emerging Entrepreneur of the Year
Buzzworks and Montpeliers, two of Scotland’s premiere hospitality businesses, are seeking an up and coming entrepreneur. The prize is a year’s mentoring…
Deanston Whisky Guru of the Year
This category is for people who not only have a great knowledge of whisky.
DRAM Community Pub of the Year
Judges here will be looking for a special pub, which is not only part of the community but supports it too.
DRAM Independent Pub Group of the Year
The DRAM is on the look-out for Scotland’s top Independent Pub Group.
Hi-Spirits Best Live Music Venue 2022
Live music is very much part of a vibrant night life, aand judes are looking for Scotland’s best.
Hungrrr Technology Adopter of The Year
Hospitality operators that embrace technology to keepe their business on track and driving them forward.
Inverarity Morton Restaurant of the Year
A memorable meal in a memorable restaurant – where have you been that has impressed?
Kopparberg New Bar of the Year
Is there a great new bar near you that deserves an award?
Molinari Casual Dining Award 2022
Recongised relaxed atmosphere venues that serve good value quality food.
Molson Coors Scottish Bar Of The Year
This inaugural award is seeking out Scotland’s best bars that have been around for more than a year.
Old Tom Gin 1821 Hotel Bar of the Year
Do you have a hotel that you love to go to relax and enjoy the great outdoors that also has a great bar?
Pernod Ricard Best Late Night Venue
Pernod Ricard, the brand owners with Havana Club, Beefeater, and Chivas in its portfolio, is looking for a late night venue that exemplifies what is good and great about late night socialising.
Sunday Mail Pub of the Year
This year the Sunday Mail Pub of the Year Award will go to the most voted for pub in Scotland at the Scottish Bar and Pub Awards.
Stolichnaya Award for Sustainability
This award is aimed at bars, restaurants or hotels that operate with an effective and sustainability agenda, from reducing plastic waste to conserving energy – it all matters.
The Busker Innovative Cocktail Bar of the Year
The Busker is an innovative ‘new to the world’ Irish Whiskey which is seeking out Scotland’s most innovative Cocktail Bar. It is looking for a bar which marries traditions with a contemporary look and which empowers bartenders to go beyond their limitations and create flavour-curious (great) cocktails.
William Grant & Sons Bar Apprentice of the Year 2022
The Bar Apprentice is back for with a bespoke programme for this year’s apprentices – an experience you can’t buy!
Jurassic Encounter follows sell-out tour with visit to Musselburgh in July
NEWHAILES House has stood firm through four centuries by the Musselburgh Coast, but this July its Gardens will experience something completely new: An invasion of DINOSAURS, as the UK’s most roarsome family event thunders into town!
Jurassic Encounter will see 50+ animatronic creatures from the Jurassic, Triassic and Cretaceous periods resurface in parks in London, Buxton, Edinburgh and Bristol, as well as making their way across the sea for a stint in Rotterdam.
Roaring into Musselburgh on July 2nd, the event will feature TWO, life-sized T-Rex beasts, which roar and snarl at passers by. Other family favourites include Pterosaurs that shriek from the trees and a 15m tall Brachiosaurus guarding her eggs.
The event makes for the perfect family day out, just a few miles along from the ever popular Portobello Beach.
Naz Kabir, spokesperson for Jurassic Encounter, says: “Last year, thousands of visitors all over the UK enjoyed a day out with our prehistoric beasts, and we’re delighted to return for another tour in 2022.
“This year we’ll have new dinosaurs, even more interactive exhibits including a VR experience and an education cinema where families will be able to learn more about these incredible creatures.”
The animatronic installations will feature information panels, containing interesting facts about each dinosaur, ensuring a visit to Jurassic Encounter will be as educational as it is exciting. And guests will be invited to watch documentaries about the period in the Education Cinema Marquee along the route, bringing the beasts to life and showing how they roamed the earth.
An excavation sand pit will allow children to dig for their dinosaur skeletons and fossils, and learn how archaeologists discovered the extinct species of past eras. And a VR experience will offer the chance to escape into a different world.
Food and refreshments will be available along the route and a merchandise trailer at the end of the route for children to purchase a souvenir. Guests are free to roam the park as they wish, and discover the animals lurking behind bushes and creeping through the undergrowth.
Tickets start at £9.50 and earlybird tickets are available now for the Edinburgh event. For a 20% discount, visit www.jurassicencounters.uk and use the code EARLYBIRD20.
This week is Learning Disability Week (20th – 26th June) and an education expert has shared five pieces of advice on how to support children if they have learning disabilities.
Interestingly, research conducted by Oxford Home Schooling revealed that while overseeing their children’s learning during lockdown, many parents spotted potential signs of a learning difficulty.
Nearly half (47%) identified symptoms of dyslexia (difficulty reading, writing and spelling), whilst more than one in four (29%) observed possible indicators of dysgraphia (impaired handwriting or spelling).
To help parents who now think their child may have a learning difficulty, Greg Smith, Head of Operations at Oxford Home Schooling, has put together a guide on how best to support your child and what your next steps should be.
Get your child diagnosed
If your child’s difficulties are having a significant impact on their learning, it’s a good idea to have them tested for a condition and diagnosed.
A diagnosis can open the door for your child to receive appropriate learning support in school. This includes allowing them extra time in exams and being supported by a teaching assistant, so it’s a good idea to look into this as early as possible.
If you’ve observed signs that your child may have a learning difficulty, you should speak to your GP, who can either make the diagnosis themselves, or refer the child for the appropriate tests.
Speak to your GP
Once a child is diagnosed with a learning difficulty, you should consult your GP. They will then be able to recommend and refer you to an appropriate specialist for support1.
Specialists can include speech and language therapists, educational and clinical psychologists and paediatricians, among others.
Make the school aware
Once you have an idea of the areas where your child is struggling, you will need to make their school and teachers aware of the situation.
This will allow the school to put extra support in place should your child require it. They will need time to consider how the condition might affect the child’s learning and work out how best to adapt their teaching.
Talk to others
Many parents find it difficult to process the diagnosis of a learning difficulty and it can be a challenge to adapt to your child’s new needs.
Don’t be afraid to seek out the support of other parents who have experienced similar situations. There are many support groups and forums out there for advice, and you and your child can even build new friendships.
Support your child
The important thing to remember is that you need to support your child, whether this is with their learning, or any other aspects of life that they struggle with.
Being diagnosed with a learning difficulty is by no means the end of the world and children with such conditions go on to enjoy rich and fulfilling lives.
You will need to be patient, and it may be challenging at times, but with the correct support system in place your child will be fine.
For information on the benefits of homeschooling for children with learning disabilities and special educational needs, head to this page:
The British Veterinary Association (BVA) has issued its annual warning to pet owners to take extra precautions when walking dogs around freshwater bodies, as warm weather conditions spark concerns about an increased risk of toxic blue green algae growth over the coming months.
The warning follows on the heels of confirmed algal bloom sightings in lakes, ponds or rivers in around 50 locations across the UK, including Millarochy Bay, Pullar’s Loch and several other locations in Scotland, as identified by the UK Centre for Ecology and Hydrology’s (UKCEH) Bloomin’ Algae app. In late April, a cocker spaniel died of suspected blue green algae poisoning after a swim in Anton Lakes, Hampshire.
Blue green algae, or cyanobacteria, are a group of bacteria that can contain dangerous toxins which can be harmful and potentially fatal to pets, livestock and birds if ingested even in small quantities.
The algae may appear as green or greenish-brown scum on the surface of water. Dogs can swallow it by drinking water from an affected lake, river or pond or while licking their fur after going for a swim. It’s possible for dogs to come into contact with the bacteria even if they don’t go into water for a paddle, as toxic blooms are often blown to the edges of water bodies.
According to trend data supplied by Professor Alan Radford and his team at SAVSNET, University of Liverpool, suspected or confirmed cases reported by veterinary practices peak in July and August, at the height of the summer season, and aren’t restricted to any one part of the UK.
British Veterinary Association President Justine Shotton said:“Many dogs love nothing more than a paddle in a lake to cool off in this weather, but we’d urge pet owners to keep them on a lead during walks near water bodies confirmed to have algal blooms this summer. The majority of blooms are toxic and it is impossible to tell the difference visually, so it is better to be safe than sorry.
“It is also important to be aware of the symptoms of exposure. These commonly include vomiting, diarrhoea, drooling, disorientation, trouble breathing, seizures, and blood in faeces. They can appear within a few minutes or hours of exposure, depending on the type of toxin ingested, and can cause liver damage and ultimately be rapidly fatal if left untreated.
“There is currently no known antidote for the toxins, so dog owners should seek prompt veterinary treatment to tackle their effects and ensure a good chance of recovery for their pet.”
Dr Linda May, a freshwater ecologist at UKCEH, explained:“All reports of suspected blue-green algae are rapidly available to view via the Bloomin’ Algae app, so by submitting records, people are providing a useful early warning to pet owners and watersports enthusiasts.
“A photograph must be included with all reports so we can quickly check if the bloom is blue-green algae or something harmless.”
BVA has issued the following advice for pet owners:
Keep pets on a lead and by your side around water bodies known or suspected to have a blue-green algal bloom – don’t let pets swim in it or drink from it.
If your dog has been swimming outside, wash its coat thoroughly with clean water afterwards.
Seek emergency veterinary treatment if you’re concerned your pet may have ingested toxic algae.
Report sightings of suspected blue-green algae with a photograph via the Bloomin’ Algae app. You can also set up notifications for confirmed sightings in your area.
“This is the most ambitious reform of public services since the creation of the NHS” – Humza Yousaf
Legislation to establish a National Care Service for Scotland (NCS) will ensure the best possible outcomes for people accessing care and support and end the ‘postcode lottery’ of care, says the Scottish Government.
The National Care Service Bill will make Scottish Ministers accountable for adult social care in Scotland – a change strongly supported by those responding to the recent consultation on the plans.
The Bill provides the foundation for the NCS, and enables the fine detail of the new service to be co-designed with people who have direct experience of social care services.
Plans have also been published to explain how that collaboration will work.
The aims are to:
support people in their own homes or among family, friends and community wherever possible, with seamless transitions between services;
create a charter of rights and responsibilities for social care, with a robust complaints and redress process;
introduce rights to breaks for unpaid carers
introduce visiting rights for residents living in adult care homes, giving legal force to Anne’s Law
ensure fair employment practices and national pay bargaining for the social care workforce;
focus on prevention and early intervention before people’s needs escalate;
create a new National Social Work Agency to promote training and development, provide national leadership and set and monitor standards in social work.
On a visit to Aberdeen-based charity VSA, which supports people with a wide range of social care needs, Cabinet Secretary for Health and Social Care Humza Yousaf said: “This is the most ambitious reform of public services since the creation of the NHS.
“People have told us they want a National Care Service, accountable to Scottish Ministers, with services designed and delivered locally. That’s exactly what we are going to deliver.
“The design of the NCS will have human rights embedded throughout, and the actual shape and detail of how the NCS works will be designed with those who have direct experience of accessing and providing social care.
“We are going to end the postcode lottery of care in Scotland. Through the National Care Service we’re going to ensure everyone has access to consistently high-quality care and support so they can live a full life. This is our ambitious goal and while it will not be easy to achieve it is vital that we do.”
Social Care Minister Kevin Stewart said: “One of the key benefits of a National Care Service will be to ensure our social care and social work workforce are valued, and that unpaid carers get the recognition they deserve.
“When this Bill passes we will be able to have the new National Care Service established by the end of this parliament. In the interim we will continue to take steps to improve outcomes for people accessing care – working with key partners, including local government, and investing in the people who deliver community health and social care and support.”
Chief Operating Officer of VSA Aberdeen John Booth, said: “We welcome the announcement that the National Care Service Bill has been published. With this being the biggest reform since the creation of the NHS we will now take the time to properly review the bill to understand the opportunities and challenges that lie ahead.
“We look forward to working with the Scottish Government to co-design the NCS to ensure the voices and needs of the vulnerable people who rely on our vital services are heard.”
Local government umbrella body COSLA has issued a statement:
A massive restructuring project, limited resources, local government opposition … Now, what could possibly go wrong?
With over 100 sites across the country, including six in and around Edinburgh, and activities for all interests, spend your summer with the National Trust for Scotland:
The National Trust for Scotland is offering visitors the opportunity to spend their summer exploring the nature, beauty and heritage of Scotland, with a different site to discover each day, alongside lots of fun-packed summer activities to try across Edinburgh and the surrounds.
Summer officially starts today, 21 June, shortly followed by the school holidays, and families will be looking for inspiration to fill those long summer days. The Edinburgh area alone offers a wealth of opportunity for the summer months, with sites including the Georgian House and Newhailes House in Musselburgh.
New and existing members of the conservation charity can visit its 129 sites for as little as £5.25 for adults and £9.80 per month for families, equating to just 17p or 32p per day, making it a great value option for excitement-filled days, all while contributing towards the conservation of Scottish heritage.
From paddling and kayaking at Kintail, to conquering Ben Lomond, whirling through the Wild Wood at Crathes Castle, going down the rabbit hole at Brodie Castle’s Playful Garden, minding your Ps and Qs at Robert Smail’s Printing Works, or drinking in the breath-taking views at Glencoe National Nature Reserve, summer fun abounds with the National Trust for Scotland.
The Trust also recently relaunched its initiative with Young Scot which offers anyone aged 11-25 with a Young Scot National Entitlement Card the chance to visit National Trust for Scotland properties, such as the tranquil Malleny Garden and the carefully restored Gladstone’s Land on Edinburgh’s Royal Mile for just £1.
For families searching for budget-friendly ways to keep children amused during the holidays, the Trust has a packed programme to help with summer holiday planning. Events taking place across the Edinburgh area include Doghailes on 31 July at Newhailes House, a fun dog event for all the family with competitions, food and drink and lots of activities for furry four-legged friends.
For those looking to embrace the health and wellbeing benefits of the outdoors there’s no shortage of breath-taking views to discover and gardens to enjoy.
Inveresk Lodge Garden is a peaceful spot tucked away in a charming village near Musselburgh while Malleny Garden is the place to go to see heritage roses sat beneath 400-year-old-yew trees.
Additionally, for people looking to soak up some culture and discover more about Scotland’s heritage, the Trust holds a wealth of stories and objects which have been passed down through the centuries at some of Scotland’s most notable historical homes, large and small.
The Georgian House in Edinburgh’s New Town has an interesting collection of paintings, costumes and period furnishings, while the immersive visitor experience at Gladstone’s Land takes you through three centuries of the building’s history.
Under an hour outside the city, you’ll also find The Royal Burgh of Culross where you can experience the paranormal in an after-hours tour of Culross Palace, or, if you prefer a more peaceful experience, Dollar Glen provides a serene green escape.
And if all of that isn’t enough, The Trust is also hosting a programme of events throughout the summer, including:
Doghailes 22 – a firm favourite for canine lovers, Doghailes takes place at Newhailes Estate, Musselburgh, on 31 July.
Redcoats in Residence – Alan Breck’s Regiment bring a Jacobite re-enactment to Gladstone’s Land on the 9 July. Meet soldiers of the Edinburgh city Guard as they support the army’s plans to march out against Bonnie Prince Charlie.
Carhailes 22– Carhailes is back, and its bigger and better then ever, with iconic cars old and new gracing Newhailes estate on 28 August.
Ceilidh in the Courtyard– an evening of dancing and amazing music brought to you by the Scottish fiddle Orchestra will be held in the stables courtyard of Newhailes estate on 13August.
Philip Long OBE, Chief Executive of The National Trust for Scotland,said: “The last two years have been a difficult time for us all, but our charity was pleased that our countryside and gardens were able to provide respite to many.
“As the country gets back on its feet post-pandemic, we look forward to welcoming new and returning visitors to our places and helping them to make the most of a summer free of travel restrictions and lockdowns.
“At the Trust we pride ourselves on creating memorable experiences. Whether attending one of our creative events, enjoying an engaging historical tour or taking part in an adventure activity, there are lots of ways to enjoy all that Scotland has to offer.
“We want to inspire everyone who spends time at our places and encourage even more people to discover the National Trust for Scotland. With so many of our beautiful places, spread all over Scotland, visitors could explore a different one every day of the summer holidays and still have more to discover. We look forward to welcoming back regular visitors, reconnecting with those we’ve missed over the past few years, and welcoming new audiences this summer to experience nature, beauty and heritage.”
Established in 1931, the National Trust for Scotland cares for, shares and speaks up for Scotland’s magnificent heritage.
Membership, which provides funding for Scotland’s largest conservation charity, can be purchased online from just £9.80 per month for families, £5.25 for adults and £3 for children.
For more information on the National Trust for Scotland and to plan your summer itinerary, visit: www.nts.org.uk.
Transformative change is needed in order to protect and restore terrestrial, freshwater and marine biodiversity in Scotland.
In light of mounting evidence that Scotland continues to experience dramatic declines in biodiversity, the Scottish Government is seeking views on its ambitious new strategy to halt nature loss by 2030 and reverse it by 2045.
A consultation on Scotland’s Biodiversity Strategy sets out the government’s long-term vision of what our natural environment needs to look like in 2045 in order to reverse biodiversity decline and protect our environment for the future. It contains a series of proposed outcomes setting out what needs to be done, and the conditions that must be in place, in order to achieve success.
Biodiversity Minister Lorna Slater said: “We recognise that the interlinked crises of climate change and nature loss need urgent action across Government and society. That’s why we have recently established the £65 million Nature Restoration Fund, committed to expanding protected areas and our National Park network, and supported the expansion of the beaver population.
“But we know we can and must do more. Sadly the evidence tells us that Scotland, in common with the rest of the UK and the world, has not done enough over the two past decades to prevent the continuing decline in biodiversity.
“Our existing strategy, published in 2004, now needs a fundamental overhaul to address the new uncertainties we face as a result of the global climate emergency. In addition to high level strategic leadership, we will need responsible public and private investment to achieve our outcomes and an inclusive ‘whole-of-society’ approach that engages with communities, business and decision makers alike.
“This consultation is a key part of developing our new strategic approach. Biodiversity is important for everyone and I would encourage everyone to share their views and help us shape this crucial roadmap toward a better and more sustainable future for Scotland.”
Francesca Osowska, NatureScot’s Chief Executive, said: “The nature and climate crises cannot be overstated. We have reached a critical point where we must take ambitious action for nature now, and Scotland’s new biodiversity strategy gives us the best opportunity to do this.
“This national endeavour means that by 2045 we will have restored and enhanced biodiversity across our land and seas. Our plant and animal species will be richly diverse, resilient and adapting to climate change and everyone will understand the importance and value of nature.
“With global biodiversity targets being agreed at the upcoming COP15, there is no better time to start making this vision a reality.
“I strongly encourage people across Scotland; partners; communities and businesses, to get involved in the consultation and play a part in creating a nature rich, net-zero future for all.”
Val McDermid has officially reopened the revamped CafeLife community cafe on Cheyne Street. Dubbed the Queen of Crime, the author has sold over 17 million books to date across the globe and is translated into more than 40 languages. Val met with café customers and fans to sign copies of her books brought along on the day.
CafeLife is run by renowned local charity LifeCare Edinburgh and all proceeds from café sales go towards the organisation’s vital care services for older people living across Edinburgh.
Val said: “Every community should have a resource like CafeLife. We’re lucky to have it. The LifeCare centre, and all the vital services provided by the charity, help support serious issues such as isolation and loneliness.
“I’m proud to be supporting LifeCare in its important work.”
The pandemic forced the café to close its doors to its loyal sit-in customers in March 2020. The closure was a real loss to the area as CafeLife is the only fully-accessible community café around, offering good value food and drink appealing to all generations and with lots of space for buggies and wheelchairs.
Opened nearly ten years ago, the team took the opportunity to upgrade the café through the covid-closure. The charity secured emergency funding to revamp CafeLife’s interiors and the kitchen team have spent time creating a new and improved menu to appeal to all tastes and dietary needs.
CaféLife will be running a series of promotions throughout the coming months to celebrate the reopening and to welcome everyone back.
· £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).
