Thumb Print - Winter 2023

IN THIS ISSUE:

PAGES 4-5

Symposium 2022

News from our 33rd International Symposium on ALS/MND

PAGES 6-7

Kev’s Ultra 7 in 7 Kevin Sinfield OBE raises more than £2 million in latest challenge

PAGE 13

Doddie Weir OBE

Our tribute to Doddie with voices from the community

PAGE 14

Research Roundup

Roundup of research news from 2022

PAGES 20-21

Take Over MND

Encouraging people to be a hero and help #TakeOverMND by fundraising

On the cover: Our patron Kevin Sinfield OBE waves to the crowd on the pitch inside Old Trafford as he completes his Ulta 7 in 7 challenge.

Making progress in our fight against MND

Looking back on 2022, it’s clear we have made significant progress in our fight against MND.

As an Association, we played our part on a number of fronts from research to communication to care, and built on the Promises we launched this time last year.

We promised our members and everyone living with or affected by MND we won’t rest until:

• MND becomes a treatable disease

• You get the care you need, when you need it

• Every day counts

• You are heard

• No one faces MND alone.

Central to the work to deliver our Promises are the personal experiences of people affected by MND. Our MND EnCouRage UK event in the summer was the perfect demonstration of that. For the first time it gave early career researchers (ECRs) the opportunity to meet people living with MND and hear their stories first-hand.

As always, we are extremely grateful to our amazing fundraisers and that includes, of course, Kevin Sinfield who is gracing our cover and who you can read more about on pages 6 and 7.

Thumb Print is the quarterly magazine of the Motor Neurone Disease (MND) Association, Francis Crick House, 6 Summerhouse Road, Moulton Park, Northampton, NN3 6BJ Reg. charity number 294354.

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If you have comments or feedback about the magazine and its content, please do not hesitate to get in touch.

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The views expressed in Thumb Print are not necessarily those of the Association. The advertisement of third party products or services does not in any way imply endorsement by the MND Association nor that those products or services will be provided, funded or available via the Association. All content © MND Association 2022.

The new year always marks a new chapter and even more so at the Association as we welcome our new CEO, Tanya Curry. The Board of Trustees and I are looking forward to working with Tanya and building on the progress of recent times.

We were delighted that former Chief Executive Sally Light’s efforts over the last 10 years resulted in her being awarded the 2022 Humanitarian Award by the International Alliance of ALS/ MND Associations recognising her leadership in raising action and awareness around MND – a fitting end to her tenure.

Finally, we are all aware that increasing bills and high inflation are likely to make 2023 a challenging year for many. As an Association, and with the help of our fantastic volunteers and supporters, we will continue to do everything that we can to ease your journey in these difficult times.

Wishing you the very best for 2023. Together, we will beat MND.

Dr Usman Khan Chair of the Board of Trustees

Clinical trials take centre stage at 33rd International Symposium on ALS/MND

For four days in December, cuttingedge MND research was showcased by world-renowned researchers and healthcare professionals at the 33rd International Symposium on ALS/MND.

Each year the Symposium gives a platform for updates on a range of topics relating to MND research. This year’s virtual event was no different with sessions on clinical trials, metabolism, genetics, neuroinflammation and clinical trial design.

The question and answer sections following the key presentations provoked discussion and the sharing of ideas among the 1,300 delegates from 45 countries.

Dr Gilbert Bensimon, from the Centre Hospitalier Universitaire de Nîmes in France, used the Symposium to exclusively announce the top-line results of the

MIROCALS clinical trial – a European trial investigating the use of interleukin-2 (IL-2) as a treatment for MND, part-funded by the MND Association.

When the whole trial population was analysed, treatment with IL-2 showed a modest decrease in risk of death for those on the treatment over the 21 months of the study. While this was found not to be statistically significant. When the survival analysis was adjusted – as planned in advance – by subgrouping people using a particular biomarker (a biological signal of damage to neurones) researchers found a statistically significant effect on survival for those who received the treatment.

This effect equated to a more than 40% decrease in the risk of death at 21 months for a large proportion (80%) of the overall

trial population who received IL-2. Further analysis is now ongoing to understand how IL-2 affects the underlying biology of the disease.

Further updates

Dr Elisabetta Pupillo shared the results from a randomised, double-blind, placebocontrolled trial of RNS60 in people with ALS/MND. The trial found promising hints this therapy may help to improve respiratory function, supporting the need for further trials to understand more.

Professor Steve Vucic shared interim results of his CNM-Au8 trial which suggested there was evidence people with MND lived longer during the trial than those not on the drug. His investigations are continuing.

Holding this Symposium virtually has given everyone across the globe access to the most exciting research, as well as access to a variety of different researchers, clinicians, nurses and carers.

Dr Andrew Tosolini, University College London

Eleanor Green, Research Information Co-ordinator, organises a live poster session during the Symposium

There has been lots in the media about Tofersen, the drug that targets the SOD1 gene mutation. Dr Timothy Miller gave an update on the results highlighting how the drug reduced levels of a marker that indicates death of a motor neurone and increased survival in people living with SOD1-MND who received the treatment earlier and for longer.

of Toronto in Canada, spoke about ‘traumatic brain injury as a risk factor for neurodegenerative disease’. She presented an overview of the research into traumatic brain injury, highlighting further research that is needed in this area. She focused on chronic traumatic encephalopathy (CTE), a slowly progressing neurodegenerative disease which occurs after multiple concussions, and on how understanding CTE could help in understanding the relationship between concussions and other neurodegenerative conditions.

Poster presentations

Throughout this year’s Symposium, around 260 ePosters (research summaries) were presented in the ePoster Hall. Technology enabled delegates to virtually wander around the posters and watch a short video presentation describing the research. For those who had questions, the live poster sessions gave delegates and presenters an opportunity to connect. The ePosters presented were on many different topics of research from genetics to clinical imaging to experimental models of MND.

Session highlights

Research suggesting potential links between contact sports, such as rugby and football, and neurodegenerative diseases, including ALS/MND has led to more discussion on the impact of head injury and concussions. Dr Carmela Tartaglia, from the University

In the session on disease presentation and risk, a noteworthy presentation came from Dr Michael Benatar from the University of Miami. Dr Benatar’s research focuses on trying to identify biological signals of the disease within the body (biomarkers), that come before any physical symptoms. He found that a biomarker, known as neurofilament light chain, increases in some people in the months to years before symptoms of MND develop.

As neurofilament light chain is known to increase when neurone damage is occurring, this suggests that the disease is already active in people before symptoms appear. This research could help with earlier diagnoses and earlier delivery of treatment.

Next year’s Symposium is due to be held in Basel, Switzerland in December and plans are already underway. For the very latest news, visit https://symposium. mndassociation.org

For more information about the Symposium, and the very latest on MND research, head to the research blog at https://symposium. mndassociation.org

Elizabeth Dellar, who won the Biomedical Poster Prize, discussed the search for biomarkers, unique biological fingerprints of MND, in the cerebrospinal fluid.

Lady Edith Wolfson Fellow, Dr Hamish Crerar, gave a talk to discuss his latest work which found a specific molecule in the neurones, known as RNA, can be changed in MND.

Sally Wheelwright is working on developing and testing a new decision aid for people living with MND who are considering having a feeding tube fitted. She found the decision aid to be practical and useful.

Updates from researchers we fund

I think it’s great that the Symposium brings together industry and research teams all over the world investigating new approaches to therapy. Every year I hear about new drugs I wasn’t aware of, and also the latest updates I’ve been looking for from recent/ongoing trials.

Dr Roisin McMackin, Trinity College Dublin

Professor Ammar Al-Chalabi and Dr Caroline Vance from King’s College London both spoke during the event

Symposium team – our MND Association staff team at the 33rd International Symposium on ALS/MND

‘Our country cares’

When Kevin Sinfield OBE laced up his trainers on a cold, dark November morning, his aim was to ‘go for a run for a mate, with some mates’. What he actually did was embark on an incredible seven-day challenge that would see him run from Edinburgh to Manchester raising awareness and funds to support the fight against MND.

280 miles later, Kev arrived to a standing ovation from a 70,000-strong crowd at Old Trafford Stadium for the Men’s Rugby League World Cup – having raised more than £2 million for the MND Association and other MND charities, inspired by his friend and former teammate Rob Burrow.

He ran through appalling weather, but Kev’s commitment to honouring Rob, and fellow sportsmen Doddie Weir, Stephen Darby and Ed Slater, never wavered. Each morning at 7am, to seven drumbeats, Kev set off to run another 40 miles, cheered on

by crowds which swelled in number as the days passed.

Kev’s

Supported by fellow runners Chris Stephenson and David Spencer and a team of cyclists and crew, Kev ticked off mile after mile. Sometimes, spotting a familiar face or a person with MND cheering from the roadside, Kev stopped for a moment. At each day’s rest stops, as he was checked over and fed high calorie food and drink, well-wishers waited patiently to wave him on his way. Each time he addressed them, sharing his passion for the cause and thanking them for turning out.

On day six, he smashed through his £777,777 fundraising target – 16 hours later as Kev ran the final leg from Bradford to Manchester that total hit £1 million. And still the donations poured in – three days after he completed his epic challenge the totaliser reached £2 million.

It wasn’t just those on route who took time out of their day to

Kev runs through the village of Ancrum in Scotland on day two

Lou Stewart, whose husband Marcus is living with MND, came out to support Kev on the final day in Manchester.

Matty English, from the Super League team Huddersfield Giants, was in Saddleworth on day seven and described Kev as a hero

Kev’s Ultra 7 in 7 tops £2 million

cheer Kev on. Every morning for 10 days, viewers of BBC Breakfast watched Kev set off before sunrise. More than 3.7 million people followed Kev’s journey on the MND Association’s social media channels, media as far afield as France shared Kev’s inspirational story, and celebrities including Frank Bruno, Piers Morgan and Dame Laura Kenny tweeted support.

After pounding the final miles to Old Trafford Stadium, Kev and his team were welcomed onto the pitch by a rapturous crowd, and BBC Breakfast presenter Sally Nugent. Tired, but buoyed by the crowd, Kev said: “We’ve met some incredible people along the journey from Edinburgh. There’s one thing for sure – our country cares. It cares about people who need help. And that MND community needs us. They need support. They need love. And we’ve got to find a cure. I can’t thank people enough for the support along the sidelines but for voting with their money as well.”

Kevin Sinfield OBE was named Celebrity Fundraiser of the Year at the JustGiving Awards 2022 in October, at a ceremony tagged ‘the most inspiring night of the year’.

Kev was awarded the accolade in recognition of his incredible fundraising feats which have raised more than £7 million in the fight against MND.

Also recognised at the awards were Stuart Bates and Charlotte Nichols – known as Spennylympics. The pair were shortlisted in the Fundraising Team of the Year category after raising £155,000 for the MND Association as they completed 80 Olympic events in 17 days during the Tokyo Olympics.

Kev has been an inspirational figure... such a great man who does so much for other people... with such humility and a sense of class. There’s a sense of hope for us now.

Ian Flatt, who is living with MND, travelled to York with wife Rachael to wave Kev off on day six.

Three years ago people hadn’t heard of MND… it’s just amazing what he’s doing – absolutely fantastic.

It’s amazing what he’s doing for such an amazing charity and the least we could do was come out and show him support. It’s amazing to see just how far it’s pushing his body.

Former Olympic middle distance runner Steve Cram joins Kev on day three

Kev being interviewed by BBC Breakfast on day four

Kevin Sinfield OBE

Support MND Carers campaign launched in Parliament

Our new Support MND Carers campaign was launched in Parliament in November.

The campaign was developed in response to a report published by the Association, which looked specifically at the challenges faced by unpaid carers of people living with MND.

245 unpaid carers shared their experiences. The results painted a stark picture with more than half of respondents (53%) saying their wellbeing had been negatively affected and more than a third (35%) saying their health had been affected.

Only a quarter had received a carer’s assessment or were in the process of having one and 40% were unaware of their legal right to the assessment. A carer’s assessment identifies the needs of a carer so they can be offered appropriate services and assistance.

Call for review

In light of the findings, the Support MND Carers campaign is calling on the Government to review why carers aren’t being assessed and why, when they are assessed, recommendations aren’t carried out.

The campaign launch event gave MPs the chance to hear first-hand from MND carers Julie and Jessica on the struggles they face as unpaid carers of loved ones living with MND.

Jessica, who cares for her husband, said: “It’s been back-breaking physically and mentally exhausting. It is a myth, this thinking that all unpaid carers make a

free choice out of love so should forfeit any rights to proper benefits and support. For many, being an unpaid carer is an exhausting necessity, done with love because of the failures of the care system to provide any kind of adequate support structure.”

Julie was one of the carers at the event who shared her story to illustrate the reality of being an MND carer.

Julie was a part-time teacher who cared for her husband Ian, who died of MND.

Left to right: Zoe, observer, Julie Davies, MND carer, Andrew Lewer MP and Jessica, MND carer

Following the launch, charities and organisations including Carers UK, the Care and Support Alliance, and We Are Carers backed our call for a review of carer’s assessments. ITV’s Good Morning Britain presenter Charlotte Hawkins, who is also a patron of the Association, also publicly supported the campaign on social media.

If you would like to find out more about the campaign or read our carers report, please scan this QR code with your smart phone or visit www.mndassociation.org/ supportmndcarers

Thank you to the nearly 2,000 of you who invited your MPs to the campaign launch, we wouldn’t have had such a successful event without you!

Investing in the Future of MND

Last October, a backbench debate on ‘Investing in the Future of MND’ was held in the House of Commons.

The debate was tabled by Andrew Lewer MBE MP and Jessica Morden MP, and received support from many MPs from across the political spectrum.

The debate covered key topics ranging from research to the cost of living crisis, as well as the need for more support for unpaid carers.

During the debate, special mentions

were given to Scottish rugby legend Doddie Weir for his commendable campaigning efforts in highlighting and securing increased funding for motor neurone disease (MND) research as part of the United to End MND campaign coalition.

Additionally, Jim Shannon MP, David Mundell MP, and John Lamont MP relayed the experiences of their constituents living with the disease and expressed the need for full and equitable access to research for

Julie said: “Being a full-time carer was a life changing situation for me. Until I was directly involved with the care of my husband Ian, I could not even imagine the difficulties we both would face. I felt very anxious, but I tried not to show my husband as he was so brave and he would get upset if he saw me upset.”

Julie and Ian eventually received home care support to help shower and dress Ian but support was delayed for four months.

“There was a confusion with the support I should have had. If I had not asked about it, I don’t think I would ever have had the support. I had to ask for a social worker as we didn’t have one. Everything was made difficult and seemed slow, and lan was becoming less and less mobile. I had to fight for every bit of support we had, no one offered advice on what kind of support I could access.”

those living with MND.

The Parliamentary Under-Secretary of State for Health and Social Care, Neil O’Brien MP, reaffirmed the Government’s commitment in providing £50 million funding targeted MND research. He also welcomed the opportunity to meet with researchers to discuss how the Government can ‘further streamline funding and avoid wasting researchers’ time with lots of applications for small penny packets of research funding.’

Rob Burrow: Living with MND

In October, our patron Rob Burrow MBE was able to share his latest experiences of living with MND through a new BBC documentary –Rob Burrow: Living with MND.

The documentary took an up close and personal look at how MND has impacted both Rob and his family. Speaking through his communication aid, Rob shared his thoughts on his love for his family, his determination to remain positive and his desire to raise awareness of the disease on prime-time television to help the MND community.

It was the second documentary focusing on the reality of day-to-day life with MND for Rob and included interviews with his family, as well as fellow MND Association patron Kevin Sinfield.

Rob was diagnosed with MND in December 2019 and since then has used his profile to shine a light on the disease. He has teamed up with other sportsmen including Stephen Darby and the late Doddie Weir to call for more research into MND.

Rob Burrow: Living with MND was aired on BBC2 on Tuesday 18 October and is available on BBC iPlayer, with millions having viewed it so far.

Since then, Rob made has history

by becoming the first non-speaking person to read a CBeebies Bedtime Story when he read Tilda Tries Again using eye-tracking technology on December 3 – International Day of Persons with Disabilities. Written by Tom Percival, the story shows a girl who suddenly finds life challenging and discovers a new way to approach her problems.

Tom Percival said on Twitter: “This is

just amazing! His reading is a powerful indicator of what can be achieved when you have the resolve, and I want to say a huge thanks to Rob.”

Professor Steven Bloch from University College London, who led the Annual Stephen Hawking MND Lecture in November, said a non-verbal person reading a Bedtime Story ‘wouldn’t have been conceivable a few years ago.’

This is just amazing! His reading is a powerful indicator of what can be achieved when you have the resolve, and I want to say a huge thanks to Rob.

Author, Tom Percival

Rob Burrow MBE with his wife Lindsey and children

Meet the professionals: Dietitians

Motor neurone disease (MND) can affect the nerves which carry messages to muscles in the jaw, lips, throat, face and tongue, causing the muscles to become weak. This can make it more difficult to swallow effectively. Health and social care professionals call these swallowing difficulties dysphagia.

Swallowing difficulties in MND can make eating and drinking difficult. People may experience:

• Less enjoyment of eating or drinking

• Eating and drinking taking longer

• Embarrassment or isolation in social situations involving eating or drinking

• Weight loss

• Dehydration, which can lead to constipation, thick stringy saliva and other issues

• Anxiety, particularly if they are concerned about choking

• Chest infections or aspiration pneumonia from food or drink getting into the lungs.

Dietitians are experts in food and nutrition. They translate the science of nutrition into everyday information about food and advise people on their dietary choices. They work very closely with speech and language therapists, who take the lead in assessing swallowing difficulties.

Dietitians can give practical, personalised dietary advice to people living with MND on how to stay nourished and hydrated. They can also advise on how to reduce weight loss and maintain a healthy body weight. For people who use tube feeding, dietitians can advise and prescribe feeds with the calories, protein, vitamins and minerals required to meet the person’s nutritional needs.

Accessing support

The NICE guideline recommends that a dietitian should be a core member of the MND care team. Ask any member of your care

team to refer you if this is not the case. Dietitians may be based in a variety of settings, including hospitals, hospices and in the community.

Further information

We have a number of related resources you may find useful:

• Information sheet 7A – Swallowing difficulties

• Information sheet 7B – Tube feeding

• Eating and drinking with MND – information on how to adapt food and drink, as well as easy-swallow recipes. Also available as a web app.

We also have further information for professionals:

• Information sheet P8 – Dysphagia in MND

Download from www.mndassociation.org/publications or contact MND Connect to order hard copies. Call 0808 802 6262 or email mndconnect@mndassociation.org

Gastrostomy decision aid launched

An online tool to help people with motor neurone disease decide whether a feeding tube is right for them has been launched.

Using funding from the MND Association and Marie Curie, researchers at Southampton University have created an online tool to help people living with MND make the decision about whether to have a gastrostomy feeding tube. The DiAMoND patient decision aid is the result of a project led by Dr Sally Wheelwright and included people living with MND, their carers, as well as clinical experts and healthcare professionals.

Up to two-thirds of people in the late stages of MND may have difficulty swallowing. This can lead to coughing, longer mealtimes and cause food to go down the wrong way (aspiration), which in turn can lead to recurrent chest infections, poor nutrition and weight loss.

Gastrostomy refers to the opening through which the feeding tube enters the stomach. People living with MND may be offered

a gastrostomy feeding tube to prevent these issues.

The purpose of the DiAMoND decision aid is to help people living with MND choose whether they want to have a gastrostomy tube fitted. If they decide not to go ahead, they may want to revisit the decision later.

The decision aid outlines the risks and benefits with each option and all the included information is evidence-based.

The DiAMoND decision aid includes a set of questions to help people work out what is important to them around this subject so they can make a decision that fits their values and preferences. It will help health and social professionals to discuss gastrostomy with the people in their care and, importantly, will aid shared decision making.

You can access the DiAMoND decision aid at https://gastrostomychoice.co.uk

Government to distribute funding for MND research

The Government will accelerate distribution of its pledged funding for MND research, following an announcement in December.

Secretary of State for Health and Social Care Steve Barclay confirmed £29.5 million of £50 million the Government had pledged will be invested immediately through specialist research centres and partnerships with leading researchers.

The £29.5 million includes:

• £8 million for early phase clinical research for MND

• £12.5 million to support discovery science at the UK Dementia Research Institute

• £3 million translational accelerator investment from the Medical Research Council

• £1 million to set up an MND Collaborative Partnership including people living with MND, charities and researchers to discover treatments

• £2 million additional investment in the partnership to focus on data gathering and analysis.

The Government said the remaining £20.5 million is available for researchers to access through consideration by the Medical Research Council and the National Institute for Health and Care Research.

A statement from the United to End MND campaign, that resulted in the £50 million funding pledge from the Government said: “We are pleased that Steve Barclay has

listened to the MND community and now outlined how the long-awaited £50 million investment in targeted MND research funding pledged by the Government will be made available to researchers.

“Our ideal scenario remains the same –to create a national MND research institute, as exists for many other diseases.

“While Mr Barclay’s plans stop short of that, they are a step forward and demonstrate a more streamlined approach to ensuring the funds reach MND researchers. Although this roadmap gives us a reason to be cautiously optimistic, we would still like more clarity and to understand the detail, processes and timelines behind it. We’d welcome the chance to discuss the questions we have with Mr Barclay.

“Getting to this point has taken a huge collective effort by people with MND, the MND scientific community and MND charities to impress how urgent and important dedicated MND funding is, upon the Government.

“Already this coalition has resulted in money being used to kickstart work we believe is the springboard to meaningful partnerships and collaborations and the key to speeding up vital research. Now the mechanisms are in place for the Government investment to be accessed more efficiently, we expect that work to gain pace.

“And, of course, the MND community don’t have time to wait – over a third of people with MND die within a year of diagnosis. They need transparency, they need red tape removed, they need

Dr Brian Dickie MBE, Director of Research Development

research to deliver treatments and ultimately a cure – fast.”

Dr Brian Dickie MBE, Director of Research Development at the MND Association said: “While this news from the Health Secretary does not entirely simplify the process for MND researchers to access the funding, it does provide some much-needed clarity and we recognise that concessions have been made to remove some of the red tape. We appreciate this positive step forward and thank Mr Barclay for listening to the campaigners who have been urging Government to remove bureaucracy.

“Of course, our hope is that this money, in combination with continued investment from the MND Association and others, will further speed up research on the development of effective treatments for MND. What we, and the entire MND community, want is to see more of that translational research – the work that takes potential treatments from laboratories into clinics.”

Presence at political party conferences

We were among six charities being represented at the Health Charity Showcase at both the Labour Party and Conservative Party conferences last October and November. The theme of the events was the third sector working in collaboration with the NHS and aimed to address:

• The barriers and opportunities charities face as a whole system in supporting integrated care

• Why integration is important to respond to the challenges and opportunities faced by health charities, and why getting integration right is so crucial

• The work that is already being done by charities to support the NHS and our ability to innovate.

We know that as MND progresses, the needs of the person living with the disease increases. Therefore, we took both conferences as an opportunity to highlight the importance of integrated and co-ordinated multidisciplinary care for those living with MND, as well as raise awareness of the disease among MPs.

As MND is considered a relatively rare disease, general health and social care professionals may not see many cases of it. That makes it vital to seek out specialists who have the appropriate experience in its treatment and care.

By using a multidisciplinary approach to care, this can ensure that different care services are well co-ordinated so that people living with MND can receive the best possible support.

Kent sings to end MND

Last September, all of our branches and groups in Kent came together for the first time for a joint fundraising concert at Rochester Cathedral, in memory and celebration of people who have died of motor neurone disease (MND).

The idea originated from a similar event organised in November 2019 by Elaine Coates, volunteer with the Mid Kent Branch and a member of Bexleyheath Rock Choir, in memory of her mum.

Elaine spent last year planning the concert along with David Ward, Chair of the East Kent Group and Alison Sullivan from the NW Kent Branch.

The event was opened by Dr David Oliver, President of the Mid Kent Branch, and saw the Bexleyheath and Rochester Rock Choirs together perform a selection of rock and pop songs. Inspiring talks were given by David Setters, who is living with MND, as well as Sadie Vile from the Association’s Research team.

Before the final song, This is Me, the choir held up photos of friends and relatives of members of the Kent Branches and Groups who had died of MND.

The choir members sang their hearts out to provide an emotional and uplifting evening.

Left to right: David Setters, David Ward, Chair East Kent Group, Jan Aldous, Mayor of Medway, Elaine Coates, Mid Kent Branch, Dr David Oliver, President Mid Kent Branch and Sadie Vile, Research Grants Manager

At the end of the concert, Sarah Rogers from the Bexleyheath Rock Choir had her head shaved – an additional fundraising effort which raised several hundred pounds. Sarah, an approved British Sign Language interpreter, added an extra dimension to each song with her expressive signing.

Just over £6,000 was raised to support those in Kent living with MND with

attendees commenting they learned a lot about MND.

Michael Fricker, leader of the Bexleyheath Rock Choir, said it was one of the best performance experiences he’s had and the rest of the choir agreed. You can see photos and videos of the event, as well as a Memorial Wall of the photos held up at the end, at www.kentsings2endmnd.co.uk

Trust donates £20,000 for AV work

A friendship has inspired a generous donation from the Catherine Cirket Discretionary Trust to support the work of our Association visitors (AVs).

The £20,000 donation was inspired by the friendship formed between Catherine Cirket, who died from MND in 2011, and Olga Bannister who was her AV.

Catherine had a particular interest in the wellbeing of others and before her death she established the Catherine Cirket Discretionary Trust to improve physical, mental, emotional, spiritual health and welfare.

Catherine particularly valued the support she received from Olga – one of our longstanding volunteers. Olga was a contact for the South Yorkshire Branch and spent 15 years as an AV. In 2018, her contribution to the MND community was recognised when she received the British Empire Medal shortly before her death.

In recognition of the personal support

Olga Bannister was Catherine Cirket’s Association visitor

offered to Catherine, the trustees of the Catherine Cirket Discretionary Trust awarded £20,000 to the Association. It was requested £10,000 be allocated to support

the Association visitor service, so it directly benefits people living with MND and their families in the same way Catherine herself was supported. The remaining £10,000 will be allocated at the Association’s discretion.

Olga’s son, the broadcaster and former BBC executive Matthew Bannister, said of the donation: “This is wonderful news. Mum’s amazing kindness and compassion made a huge impact on so many peoplenot least on my dad who she looked after through every second of his struggle with MND. I am delighted that her legacy lives on through this kind donation by the Trust.”

Anthony Meehan, Chairman of the Catherine Cirket Discretionary Trust, added: “During her time with MND, Catherine especially valued the early support and advice she received from local workers/ volunteers from the Association. She also took an interest in MND research and kept in touch with the research team based at the University of Sheffield.”

Doddie Weir OBE

Tributes poured in from across the country following the death of rugby legend Doddie Weir OBE from motor neurone disease.

Doddie died on 26 November, five years after announcing his MND diagnosis on Global MND Awareness Day in June 2017.

In that time he became an inspiration to so many people by sharing his story, raising awareness and campaigning tirelessly on behalf of people with MND.

A former Scotland lock who won 61 Test caps and played in the British and Irish Lions rugby team, Doddie set up the My Name’5 Doddie Foundation which has gone on to fund research projects across the UK. It has also generously donated more than £700,000 to our support grant programme since 2018, resulting in 3,200 people being supported through mechanisms like stairlift installation.

Doddie’s determined attitude became a driving force in the United2EndMND campaign – a collaboration between people living with MND, our Association, My Name’5 Doddie Foundation, MND Scotland and neurologists – which resulted in the Government announcing a £50 million investment over five years into targeted MND research.

Sally Light, our Chief Executive paying tribute at the time of Doddie’s death said: “Doddie’s big personality had a big impact on the MND community which was inspired by his determination to make a difference after receiving his diagnosis. I had the privilege of meeting him on several occasions and he wasn’t a man you could ignore! By bravely deciding to share his MND journey with the world, Doddie raised much needed awareness of MND and millions of pounds to fund research. His energy also inspired others, including other former professional sports people, to fight MND in their own ways and his openness provided comfort to many others who knew they were not facing the disease alone. We have been so grateful for the generous donations from Doddie’s Foundation which have helped us to provide vital support to so many people living with MND. On behalf of all of the MND community, we are truly thankful for his support and deeply saddened by his death.”

The MND Association sent a message of condolence to Doddie’s wife Kathy, his children, family and friends, and also to all at the My Name’5 Doddie Foundation.

“Doddie Weir was a hero – we are so sad to hear of his passing. His immense talent on the pitch as well as his tireless efforts to raise awareness of MND were an inspiration. Our thoughts are with all those who loved him. He will be hugely missed across the entire rugby world. W&C.”

The Prince and Princess of Wales

“Doddie was a giant as a player but his campaigning following his MND diagnosis made him a colossus. Doddie was able to give Rob the greatest gift of hope. He has been like a big brother to all of us since that day. He will always be a champion.”

Kevin Sinfield OBE, fellow sportsman and Association patron

“Yesterday was such a sad day for the MND community losing our hero Doddie Weir. I was diagnosed the same time as he was. My heart is breaking but I will keep fighting to find that cure.”

John Adams, who is living with MND

“Gutted. Such an inspiration through sport and charity. Will be greatly missed but has left such a legacy for MND. Thank you.”

Ross Woods, whose dad was diagnosed with MND last year

“Rest in peace Doddie Weir, thank you for everything you have done in the fight to find a cure for Motor Neurone Disease. You chose to spend your limited time raising awareness and money, thank you. You will always be an inspiration.”

Ruth Stross, Neurology Nurse

“A very sad day. Doddie was a beacon of hope and courage for the MND community and far far beyond. His legacy will endure.”

Dr Usman Khan, MND Association’s Chair of the Board of Trustees

Tributes came from across the MND community and on Twitter

ROUNDUP: MND research in 2022

In the news

MND research has regularly featured in the headlines in 2022.

One recent study suggests genetic testing guidelines in the UK need to be changed to include people living with MND who do not have a family history of the disease, but who may have genetic links to MND.

New research indicates evidence of MND can be seen inside people years before they develop physical symptoms. This work could help early detection of MND.

A feasibility study investigating Terazosin as a treatment for MND started in the UK in August. Already approved to treat high blood pressure, it is hoped that it will be effective against MND.

Research into MND is accelerating, with scientists believing we are closer to a cure than ever before. Here is a snapshot of some of the MND research news we saw in 2022.

Translational Research Fund

The MND Association, along with other charities and government research organisations, has awarded £4.25 million to MND experts at six UK universities. This new ‘MND Collaborative Partnership’, which includes people living with MND will address problems hindering MND research and aims to discover MND treatments within years rather than decades. The Partnership, to which the MND Association contributed £1 million, will provide the launchpad for further collaborative investments into MND research.

Clinical trials

Clinical trials have taken centre stage throughout 2022, with promising results being announced from several trials.

Here are some of the highlights: Tofersen: Results from the extended clinical trial of Tofersen announced in June 2022 suggested Tofersen slows the progression of people living with SOD1 MND.

RESCUE-ALS: Further results from the extended clinical trial of CNM-Au8 were announced throughout the year, continuing to suggest people with MND taking the drug may live longer.

AMX0035: This combination therapy, was approved for the treatment of MND in both the United States and Canada and is currently under review in Europe. A decision is expected in early 2023.

Oral Edaravone: An oral form of the drug Edavarone, found to behave similarly as when delivered intravenously, was approved in the United States in May. Previously approved in the United States and Japan via intravenous (IV) delivery only, the oral version can now be taken at home.

Research we fund

At the end of September, our research grants portfolio was approximately £16.8 million, comprising 87 grants we are committed to fund and £1.8 million of new funding awards.

Dr Barney Bryson, University College London, is one of the senior non-clinical research fellows we fund. Dr Bryson has developed a light-based technique which controls the activity of motor neurones and stimulates muscle contraction.

He used stem cells to produce replacement motor neurones which were designed to respond to pulses of light. When used in mice, he found that the cells were able to control muscle movements and it is hoped that this could be a potential strategy to prevent muscle wasting in MND.

To keep up to date on all the latest research please head to our website: www.mndassociation.org/ research/latest-news/

Think Tank pushes on with voice project

The NextGen Think Tank is actively working on its latest project –NextGen Voice.

The project aims to benefit people living with motor neurone disease (MND) by allowing them to retain the sound of their voice and spontaneity of speech.

The Think Tank was founded in 2019 by Rolls Royce employee Stuart Moss whose father died of MND, in collaboration with the MND Association, and came together for its latest summit in October at BT’s headquarters in London. There were new representatives from Apple, Area23, Borderland, IBM and University College London alongside familiar faces from Dell, Google and the NHS.

Updates were given to highlight real world usage of NextGen Think Tank technology, including how rugby player Ed Slater used the I Will Always Be Me e-book to bank his voice.

Thanks to advancements in technology and the work of our Next Generation Think Tank, there are lots of alternative and augmentative communication (AAC) options for people living with MND.

Nick Goldup, Director of Care Improvement at the MND Association and co-founder of the Think Tank said he has

seen the group evolve into an ’ecosystem of brilliant innovations’ and praised the positive energy on the day of the summit. Attendees watched an exclusive preview of a promotional video for Project Relate, which launched in the UK in December, Google’s newest accessibility app which helps people living with MND communicate better by transcribing speech in real-time. People with nonstandard speech can teach the app to understand their unique speech patterns, and communicate using three features: Listen, which transcribes their speech into text; Repeat, which repeats what is said in a clear voice; and Assistant, which connects with Google Assistant to help people get things done. The app may be helpful for people living with MND with

affected speech, as it enables the user to continue to use their voice and be understood by those around them.

Nick said: “Thanks to advancements in technology and the work of our Next Generation Think Tank, there are lots of alternative and augmentative communication (AAC) options for people living with MND. However, there are far fewer tools for people whose speech has become affected, but who still want to communicate verbally. Google Relate will be a fantastic tool to support people with MND who are impacted in this way.”

Yvonne Johnson, whose speech has become slurred due to MND, partnered with Google to develop Project Relate.

She said: “Communication is so important, especially for people whose voice has changed. With Project Relate’s Repeat feature, I feel better understood – not just by unfamiliar listeners but also my husband – it’s the difference between a meaningful conversation and someone just nodding. I hope other people start using it.”

Also on the day, MND was spotlighted on the famous BT Tower which featured the call ‘Let’s beat #MND together’ along with the Association’s logo. Nick Goldup added: “To see MND lit up on the worldfamous tower during the event makes me very proud of the dedication and commitment of the Think Tank members.”

A group from BT’s apprenticeship scheme were tasked with heading out to capture photos of the BT Tower, which were then shared on social media to raise awareness of MND further in the business community.

The MND Association’s logo featured on the famous BT Tower in London

Nick Goldup, our Director of Care Improvement, at the NextGen Think Tank summit

Representatives attend the NextGen Think Tank at BT’s headquarters in London

Our commitment to inclusion

One of our five ambitious Promises, launched last year, is that no one faces MND alone.

MND affects every person differently –and it knows no barriers. It is present in all communities and among people of all backgrounds. And so the Association has committed to also being in all communities and among people of all backgrounds.

Promise Five interest group: This group of like-minded people comes together on an occasional basis to consider the focus of our work to deliver this Promise. You are welcome to join this group.

Please contact john.gillies@ mndassociation.org

Network groups: These are open to people living with MND, people affected by the disease, as well as volunteers and staff. They provide peer support, raise awareness and hold the Association to account on matters relating to the LGBTQIA+ and diversity, equity, ethnic minority communities (renamed from BAME following a group discussion). If you are interested in either of these groups please contact LGBTQIA@mndassociation.org or DEEM@ mndassociation.org

Forum: The Hidden Disabilities and Conditions forum provides peer support for people who are neurodivergent or managing mental health conditions or challenges.

New ways to get in touch

People with and affected by MND will have more ways than ever to connect to the support offered by the Association, thanks to the roll out of technology for volunteers.

Over the next two years an extensive programme will see volunteers offered an MND Association email address. And as part of the project they will also be given access to apps such as OneDrive, Outlook. Excel and Word.

Many people affected by MND find email a convenient and easy way to keep in touch, particularly if they are unable to attend meetings or events. It enables people to use screen reader software and to get in touch when suits them.

With volunteers set to have access to their own MND Association email address, being in contact will be simple and secure. Email signatures will link directly to local group websites or information and, because volunteer email addresses are part of the MND Association’s technology system, all emails sent to them will benefit from its security.

A pilot project is already underway and feedback has been positive. One volunteer said: “The @mndassociation.org email address gives people confidence that I

am a bonafide volunteer. All of my MND Association emails are in one place so I can search for information that I need easily and be sure I am not forgetting to answer emails which might get lost in my personal email account.”

Throughout 2023 our inclusion work will focus on:

• Understanding the needs of different communities and removing barriers to their involvement with the Association

• Identifying and removing health and social care inequalities relating to people affected by MND

• Ensuring our services and products are fully accessible

• Making sure where you live makes no difference to the support you receive from the Association

To find out more about this work search ‘inclusion’ on our website www.mndassociation.org

Festive fundraising raffle

The @mndassociation.org email address gives people confidence that I am a bonafide volunteer. All of my MND Association emails are in one place so I can search for information that I need easily and be sure I am not forgetting to answer emails which might get lost in my personal email account.”

To find out more please contact the Volunteering team by emailing volunteering@mndassociation.org

Thank you to everyone who bought and sold tickets for the Christmas raffle – your efforts helped to raise a fantastic £130,000 for families affected by MND.

Congratulations to all those who won prizes including Kay Murphy from Reading who won first prize of £5,000, Ann Johnson from Buxton who won £1,000 and Peter Sudlow from Preston who won £500. A full list of all the lucky winners is available at www.mndassociation. org/raffle.

If you didn’t win this time, don’t worry! There will another chance to win some great prizes and support people living with MND at the same time in our Summer Raffle. Full details of how to take part will be available in the Spring edition of Thumb Print

Vice Chair’s message

I am delighted to write this update as Vice Chair of the Board of Trustees as our Chair, Dr Usman Khan, takes the Welcome slot at the beginning of this edition of Thumb Print.

Some highlights of 2022 included:

• Launching the five Promises and already seeing the way in which they are inspiring and energising the MND community to make a real difference to everyone affected by MND.

• Having in-person Board meetings again after two years of online meetings.

• Attending the MND EnCouRage UK event and meeting our Royal Patron HRH The Princess Royal. It was a privilege to witness the impact meeting people affected by MND and their carers and, hearing first-hand their stories and experiences had on young researchers.

• The success of the Access to Multidisciplinary Care Project (identifying

gaps where people affected by MND struggle to access multidisciplinary care and collaborating with local partners to address these) coming to fruition with the first post in place in Surrey, with more to follow.

Looking ahead to 2023:

Plans are already underway for the 2023 AGM. For the first time in four years this will be in-person as part of the Annual Conference with the option to join remotely if needed. Watch out for further details in our spring edition of Thumb Print

On behalf of my fellow trustees, thank you for everything you do for the MND community and the MND Association in whatever way. We would not achieve anything without your support.

Catherine Knights Vice Chair of the Board of Trustees

Alliance celebrates 30 years

The International Alliance of ALS/ MND Associations marked its 30th anniversary at the end of 2022 as it continues to strive towards the vision of a world free from MND.

The International Alliance, of which the MND Association is a member, held its annual Alliance Meeting in San Diego in November. This annual event provides the opportunity for members to meet and share advances in supporting people living with MND.

Sally Light, our previous CEO, and Nick Goldup, Director of Care Improvement, attended to talk about how the United To End MND campaign helped secure a £50 million investment commitment from the Government.

Cathy Cummings, Executive Director of the International Alliance, said this was a real win in the MND community.

“A win in any jurisdiction is a win for us all. Supporting the fundamental rights of people living with MND drives everything we do.”

The International Alliance has outlined 11 fundamental rights of people living with MND and these include the highest quality care, treatment, and the best quality of life possible.

This year’s Alliance Meeting saw a record attendance of members from around the globe, with 150 representatives attending in person and a further 40 online.

The keynote speech was delivered by Dr Colleen O’Connell from Dalhousie University, Nova Scotia on the right to a dignified quality of life for people living with MND.

Catherine Knights

Spotlight on Susan Fletcher Watts

When Susan Fletcher Watts was diagnosed with motor neurone disease (MND) in July 2021, it initiated the start of her relationship with the MND Association.

Last year, Susan was elected to the Board of Trustees and she says the most rewarding thing about being a trustee for the Association is knowing she is ‘helping and contributing to a truly worthy charity.’

After her diagnosis, Susan’s first contact was with Lesley Ogden from the Oxfordshire Branch of the Association. Lesley now visits Susan regularly at home as an Association visitor (AV) and they have built up a valued relationship.

Susan said: “When I was newly diagnosed, I was only impeded by a slightly slurred voice so that didn’t stop me doing anything. Like many people given the shock that they have a, currently, terminal illness, I was totally focused on finding a cure and being in a clinical trial that was going to lead to it.”

Unfortunately, there were no clinical trials available to Susan in 2021 – this is something she wants to change.

She said: “I want to see every person with MND having the opportunity to take part in a clinical trial that has the objective of a cure or effective treatment within six months of being diagnosed.”

News of the lack of trials available at the time prompted Susan to organise her own fundraising walk which saw her completing the 260-mile Pennine Way with the mantra ‘Walking the Positive Path’ to push her through the endeavour. She raised more than £80,000 for the Association with the money put towards funding research.

Susan said: “I had never led a fundraising project before so spoke to Lesley. She recommended I get in

contact with the Association’s fundraising team and I never looked back.”

Susan’s interest in becoming a trustee began when she noticed an article in Thumb Print which mentioned people living with MND are activitly encouraged to stand for election to the Board. After what she describes as a ‘motivating discussion’ with the then Chair, Richard Coleman, Susan put her name forward.

She said: “I was delighted to be elected in July last year. My initial interest (in being on the Board) was to drive forward support and campaigning for research to find a cure. Since then, my MND has progressed and I now realise the equal importance of helping people living with MND and their carers with support and advice – something both I and my husband, Brian, have made use of. So my trustee interests are broad – I want to help and do my bit.”

These days, Susan is actively involved in the Association’s Care and Governance Committees and the Biomedical Research Advisory Panel.

She said: “I am impressed by the volume and quality of the research submissions, and the panel of experts who give their time to do detailed reviews. We can be optimistic things are going in the right direction even if that cure won’t be here tomorrow. A personal highlight as a trustee is the understanding and patience shown to me, given my MND slows things down. I have to use written chat rather than speak.”

Susan’s motivation in staying actively involved in the Association for a sustained period of time has never faded. On her plans for the future, she said: “To battle on to get ever better care provision for people living with MND and to find that cure. Or to put it another way, to drive to deliver our five Promises.”

I want to see every person with MND having the opportunity to take part in a clinical trial that has the objective of a cure or effective treatment within six months of being diagnosed.

Be a hero and #TakeOverMND

We want to stop MND in its tracks – and to do that we need a band of heroes to help us. It’s that time of year where we ask you to help #TakeOverMND by getting involved, signing up to a fundraising event and encouraging others to do the same. Here, people living with MND share why we need you.

Jennie

Starkey

Lecturer Jennie Starkey was diagnosed with MND in September 2021 after noticing changes to her speech during lockdown. She said: “I went to the GP and got diagnosed with low iron which I knew wasn’t right. I called back for a second opinion, which wasn’t pleasant, but I stuck to my guns. I got referred to a neurologist at my local hospital who did a number of scans and tests. Each time a test was returned with a clear result, I thought it was brilliant that I didn’t have these conditions they were testing for –however I didn’t realise the reality that with each clear test I was getting closer to a motor neurone disease diagnosis.”

Jennie and her family and friends have fought back against MND by fundraising. First Jennie, who turned 50 in November, joined our challenge to complete 15,000 steps every day last January. Since then, she’s teamed up with family and friends to

organise an open water swimming event, sponsored walk, pamper day and yoga fundraiser.

ashamed of. This is my journey and I’m going to make the best of it. Life is for living.”

Last year, Yvonne’s fundraising efforts included giving up chocolate for a month as part of our ‘Give it Up!’ challenge.

On taking part in the steps challenge, Jennie said: “It’s beneficial on different levels – it’s exercise, it’s helping me achieve a goal, and I’m raising money for the MND Association. They funded my voice banking and eventually I will be asking for further support from them. It’s made me feel like I am giving a little back.”

Yvonne Johnson

54-year-old Yvonne Johnson is passionate about sharing her story to raise funds and awareness and show that, despite her MND diagnosis, she is still ‘Yvonne’.

“After I was diagnosed with MND, I’ve never cried so much as I did that night,” Yvonne said. “I just cried and cried, but after telling my husband and speaking to my doctor I felt like something was lifted. That’s when then I told my husband and he said, ‘you are still the same person’. I thought, ‘yes, that’s right – I’m Yvonne, not MND.’ I want to do all I can to raise awareness as there is nothing to be

“I always wondered, what could I do?” she said. “I saw the challenge and thought I could give up chocolate, which would be a challenge for me! I reached more than my target, so I was pleased with that. I think we’re closer to finding a cure, but we need to find one.”

Sam Hayden Harler

Dad of one, Sam Hayden Harler, was diagnosed with MND last year when he was just 35. He said: “Since diagnosis I try and look for the positives every day. Yes, there are days when I cry, I think that’s going to happen to me, but I try not to think that far ahead.

“My neurologist said something that really stuck with me. She said some people bumble through life for 50, 60

It’s made me feel like I am giving a little back.

I saw the challenge and thought I could give up chocolate, which would be a challenge for me.

Jennie Starkey

Yvonne Johnson

Sam Hayden Harler

#TakeOverMND

Ways to #TakeOverMND this year

Fundraise your way

Anywhere, any time!

Organise your own fundraising event, from a quiz night at your local pub to a clothes swap.

Rob Burrow Leeds Marathon 14 May 2023

The MND Association is one of the official charity partners for this brand new event. Join us as we paint Leeds blue and orange for this epic 26.2 mile route, with plenty of support along the way.

Leeds Half Marathon 14 May 2023

Starting and finishing at Headingley Stadium on the same day as the Rob Burrow Leeds Marathon. The Leeds Half Marathon is perfect for runners who prefer a shorter distance.

years and don’t really do much with their life. You will go away now and really live your life. And that’s what I’m doing. I want to live every day as best I can.”

To anyone thinking about fundraising for the MND Association, two words: Do it! It doesn’t have to be a glitzy, glamorous event.

Sam created a bucket list of all the things he wanted to do, including being an extra on a television show and being driven around Brands Hatch motor racing circuit. He also pledged to raise £50,000 for the fight against MND and he’s passionate about encouraging others to fundraise too. Sam said: “To anyone thinking about fundraising for the MND Association, two words: Do it! It doesn’t have to be a glitzy, glamorous event. Hold a coffee morning in your local community centre or have a clear out of your wardrobe and sell what you don’t need. Whatever you do, even if you raise a small amount, it all adds up.”

John Adams

John Adams, who was diagnosed with

MND six years ago, faces his diagnosis with a similarly positive attitude. His daughter Helen said: “I can remember very clearly the day Dad was diagnosed with motor neurone disease. He made us a promise on that day which he has never broken. He said, ‘I will always stay positive, and I will never stop fighting’. He’s never broken that promise.”

John’s infectious sense of humour and popular fundraising exploits have seen him become a hero of his local community in Droitwich. Affectionately nicknamed ‘Sir John’, he was honoured to be invited to switch on the town’s Christmas lights in November and regularly appears in the local newspaper.

John has raised more than £20,000 for the MND Association having organised several fundraisers including making Christmas gift tags and completing his own 7 in 7 challenge on his mobility scooter. John said: “I hope the money I have raised will help to find a cure – that is my wish. MND could hit any family, so it’s so important we find a cure. Every penny we raise brings us a step closer.”

Be a hero and sign up to fundraise and help #TakeOverMND in 2023. Visit www.mndassociation.org/ takeovermnd

Great North Swim 9-11 June 2023

Try something new and brave the beautiful Lake Windermere for an open water swim. A variety of distances are available, from 250 metres to 5km. makeit! in March March 2023

Join our challenge to get creative – however you like. Get sponsored to bake, knit, paint, craft, crochet or upcycle throughout March. The choice is yours.

5km local run

Various locations and dates throughout 2023

Get together with friends and family and join a 5km fun run in your local area. If you are new to running a 5km running event this is the perfect target to aim for.

Cotswold Way Ultra Challenge 24-25 June 2023

Walk, run or jog 25, 50 or 100km through the beautiful rolling hills of the Cotswolds. You’ll enjoy full support and hospitality as you take in the picturesque villages and stunning scenery of the Cotswold Way.

I hope the money I have raised will help to find a cure –that is my wish. MND could hit any family, so it’s so important we find a cure. Every penny we raise brings us a step closer.

John Adams

John Adams

47 Peaks in five days for wife and mother

A husband and his two daughters have climbed 47 peaks in Snowdonia in just five days in memory of his late wife and their mother, Keta Hansen.

Keta died from motor neurone disease (MND) aged 47 in January 2019 and the 47 Peaks was the latest challenge taken on by her husband Kevin Street and daughters Hebe, and Violet – each peak chosen to mark a year of Keta’s life.

The family has been fundraising for the Association for the past seven years – the 47 Peaks has added another £50,000 taking the total so far to £300,000. Kevin said Keta was always ‘courageous and smiling’ throughout her five years of living with MND, having been diagnosed in 2014.

Kevin, Hebe and Violet were joined on the challenge by Kevin’s brother, Neil and school friend Matt. They clocked up more than 52 hours of climbing time, walked

115km, and ascended more than 28,000ft – the equivalent of climbing Mount Everest.

All five started together on day one and ended on day five in the village of Betws-y-Coed after completing Plas y Brenin, at the National Outdoor Centre in Snowdonia.

Kevin said: “Keta was a huge inspiration to everyone who met her. The way she dealt with the adversity of this disease over five years inspired us as a family, along with many of her friends, to complete our fundraising challenges.

“There is still no proper understanding of the cause of MND, let alone a cure. However, there is much optimism among the medical research and MND community that major progress is being made and a breakthrough imminent. But it all costs money, which is why fundraising such as this is just so important.”

Keta was a huge inspiration to everyone who met her. The way she dealt with the adversity of this disease over five years inspired us as a family, along with many of her friends, to complete our fundraising challenges.

Kevin Street with his daughters, Hebe and Violet, after climbing one of the 47 Peaks

Keta Hansen

Welsh Homes for MND Senedd event

In October, we held an event at the Senedd to highlight our Welsh Homes for MND campaign. The event focused on the findings from our two newly published reports that investigate the housing adaptation process for people living with MND in Wales.

The reports found that out of the 22 local authorities, only 14 are implementing a non-means-tested system, and 11 are applying a fast-tracked process for small and medium housing adaptations for people living with MND in Wales.

Peter Fox MS (Member of the Senedd), our champion of MND, opened the event and spoke about his involvement with the MND Association and the long-lasting impact meeting constituents with the condition has had on him.

Our Public Affairs Manager, Sian Guest, explained the findings of the two reports and was joined by Richard and Martin, who are both living with MND, and Martin’s wife Linda.

Richard recounted his experience of means-testing and how the process has impacted him both financially and mentally. Linda and Martin detailed their experience of the apparent fast-tracked system in place and referenced the nine months they have been waiting for their

housing adaptations.

Peter Fox MS closed the event by expressing: “More needs to be done. Our council leaders need to hear these messages and see what their help could do if only they could mobilise the resources where they need to be.”

More than 20 Senedd Members from across the political spectrum attended the event. Many reiterated their support

for our campaign and said they would do what they could to help, either by submitting questions on our behalf or chasing up their local authorities.

End of life care in Wales

Following on from our successful joint petition with Marie Curie Cymru, Don’t let the plan run out for dying people in Wales, the Petitions Committee met to discuss the updates surrounding the capacity and timescale of an end of life care plan in Wales.

The petition, which had over 2,000 signatures, called on the Welsh Government to develop a dedicated end of life care programme at pace to prevent thousands of individuals from missing out on quality care as they reach the end of their life.

Buffy Williams MS led the update and recommended the petition be left open until all questions regarding capacity and timescales were answered.

As well as this, the Welsh Government recently published the Quality Statement for Palliative and End of Life Care, which sets out its visions for palliative and end of life care delivery in Wales.

We will continue to monitor the principles being put into practice.

Wheelchairs provide liberty

The MND Association has a team of specialist wheelchair therapists on hand to answer questions, and provide help and advice to people with motor neurone disease, and healthcare professionals supporting them.

Support may include:

• Advice on types of wheelchair and mobility scooter

• Referral to wheelchair and community services

• Review of existing equipment and support for changing needs

• Liaison with wheelchair providers to support provision

• Evaluation of new technologies

• Grant application assistance for additional accessories or equipment hire

• Education and training for manufacturers, wheelchair providers and people living with MND.

Anne Buchanan, Care Improvement Co-ordinator, said: “Our therapists are passionate about their roles, with the ultimate goal being to identify equipment for individuals that will meet their immediate and longer-term needs, whilst addressing their changing needs.”

Simon Aspray was diagnosed with MND in 2005. Since then, he has had two wheelchairs with financial support from the Association.

“One of the most essential things about a wheelchair is the liberty it gives you,” said Simon. “This one has done extremely well, I’m very proud of it – especially because of how adventurous I have been in it.”

• Did you know, 1 March marks International Wheelchair Day?

Contact our wheelchair enquiry line at wheelchairqueries@ mndassociation.org

Maggy is one of our experienced wheelchair therapists based at an MND Care Centre in London

Sian Guest with Rhun ap Lorweth MS at the Welsh Homes for MND event

Record-breaker writes to capture positive life

When Paul Jameson was diagnosed with motor neurone disease (MND) in 2018, he quickly started putting together his own bucket list and has never looked back.

Paul’s life experiences since his diagnosis have included becoming the first person to play tennis atop Mount Kilimanjaro, setting a new world record for a game played at the highest altitude, and performing in his own opera – Paul’s Aria.

Now he has written a book, Very Much Alive, with the aim of inspiring more people living with MND to document their own life experiences.

Paul said: “The book is about hope and the fact that many people as they near the end of life can experience great things, which can be very uplifting. After I came up with my physical bucket list, my attention then turned to more of an emotional one and my legacy, in terms of how I wanted to be remembered. My own father died when I was 14 so I would have loved to have known more about him – the real him and what made him tick.”

The last five years has seen Paul experience, in his words, ‘more than in the previous 20’, all of which has provided plenty of content for his book.

At the end of last year, Paul joined the National Association of Disabled Surfers for a surfing experience in Devon and also spent a weekend quad biking around mountains in Portugal.

“When I first told my kids about my diagnosis, we just hugged and kissed like never before and ended up having a fantastic evening which helped inspire my positivity from the very

beginning. I have also been able to talk more openly with my friends and we have all had some real meaningful conversations.”

Paul recommends writing a book about yourself to talk about ‘the real you and what makes you the person that you are.’

“Future generations are more interested in the type of person you are – your character and your personality. Writing a book has really allowed me to talk even more about living with a terminal illness like MND, again with a positive spin. Like Rob Burrow, who has inspired me, I just want to keep going and have the best time I can. There is still so much I can do.”

In late 2020, Paul was awarded the British Empire Medal having raised more than £150,000 for the MND Association. His fundraising efforts have now surpassed £200,000 with all proceeds from the new book also being donated directly to the Association.

I hope my legacy is one of a positive person who loved life and showed how embracing death can help you to embrace life.

Paul Jameson launching his book Very Much Alive

Paul Jameson (right) with his family after climbing Mount Kilimanjaro to play tennis

Rugby and MND looking behind the headlines

In recent years, there have been several reports suggesting people who play contact sports – such as football or American football – at a professional level have an increased risk of developing motor neurone disease (MND). The latest of these, published last October, looked at the risk of developing different neurodegenerative diseases, including MND/ALS, in a group of Scottish rugby union players.

The study compared health outcomes of 412 former professional rugby union players with 1,236 people from the general population to see how many people in each group developed neurodegenerative diseases.

The participants were aged between 30 and 100 – selected for similar age, where they lived and their socioeconomic circumstances. The paper concluded that former Scottish international rugby union players had an increased risk of developing MND compared to the general population.

However, as this is a relatively small sample size for a study of this type, the findings have to be interpreted carefully. This is because the study population may

not be a good representation of the wider population and the margin for error in the study is very large.

Another thing to consider is that MND is not a common condition, and although the report suggests an increased risk associated with playing rugby at an elite level, the overall risk would still be low.

When looking at the results of a study like this, it is important to think about what other factors might be involved. These could include whether any of the cases of MND in this study could have been inherited, and if there were other environmental or biological factors that played a role in the development of the disease.

MND Association funded researchers have shown that high levels of physical activity can be linked to the development of MND in some people who also have a genetic risk. It is possible that some high-performance athletes, such as rugby players, may carry a different genetic risk to the general population. More detailed research is needed to really understand if this is the case.

There is evidence to suggest that there are at least ‘six steps’ that need to be met

for MND to develop. As yet, we don’t know what all of these steps are. Exposure to risk factors from playing contact sport may account for one or more of these steps, but it is unlikely that this alone is a cause.

This study also only lookd at men who play rugby at the highest level and didn’t analyse recreational rugby, therefore we cannot assume that there is an increased risk in people who play recreational rugby, or that an increased risk is specific to the sport.

At present there isn’t enough definitive evidence to suggest playing sports or being active directly leads to someone getting the disease, and we know that sport and exercise have wide reaching benefits for both body and mind. To get clearer answers on whether playing rugby at an elite level increases the risk of developing MND, this work needs to be extended to study larger groups of professional rugby players from different nations.

More information about this study can be found on our blog at http:// mndassociation.org/rugby

Campaign success: 6 months scrapped

As one of his first legislative acts as monarch, His Majesty The King has granted Royal Assent to the Social Security (Special Rules for End of Life) Bill. This ‘rubber stamp’ means that the six-month rule has now been scrapped in all four UK nations, marking the end of the Scrap 6 Months campaign journey.

The MND Association, alongside our partners at Marie Curie, have campaigned since 2018 for the Government to reform the ‘special rules’ process to better suit the needs of people with more complex and unpredictable terminal conditions like motor neurone disease (MND).

The process, which provides a fast-track allowing people living with a terminal illness to access disability benefits more quickly, will expand to people judged to have 12 months or less to live across England, Wales and Northern Ireland.

This will apply to Personal Independence Payment (PIP), Disability Living Allowance (DLA) and Attendance Allowance

(AA). This follows the same changes made to Universal Credit (UC) and Employment and Support Allowance (ESA) earlier this year.

During the Bill’s reading in the House of Commons, Jessica Morden MP said: “These changes represent a starting point rather than a full stop. We must ensure that we do more and strengthen our resolve to ensure that none of our constituents or loved ones ever face the indignity of spending their final months worrying about whether they will have enough money to make it through the week.”

We’d like to say a massive thank you to all of our volunteers who have campaigned tirelessly for this change. This landmark legislation will provide vital financial support for those living with and affected by MND when accessing certain benefits.

Rochdale to Oz on a bike

Alex Haddock has set off from his home in Rochdale and is cycling his way to Australia, to raise awareness of motor neurone disease (MND).

Alex’s epic journey will take him through Europe, the Middle East and beyond as he aims to raise money and awareness for the MND Association.

Keen cyclist Alex has already completed a number of challenges for the Association, raising over £22,500 in memory of his dad, Darren.

He’s hoping his latest challenge will bring in even more donations, while raising awareness – not just at home but across the world.

Alex is cycling every day and finding accommodation where he can along the route, sometimes camping in very bad weather.

He said: “Some days can be really tough when you’ve had a rough night camping and the weather isn’t the best, but it makes it all worth it when you think about the awareness you’re raising for such a good cause.”

Alex recently hit Italy and is now heading into the Balkans then the Middle East.

It will take him over a year and a half to reach Australia, by which point he will have travelled more than 18,000km and visited at least 20 countries.

Swansea fans come together to pay tribute to Len Johnrose

Len Johnrose’s name will be fondly remembered around Swansea City Football Club for years to come.

His goal in the must-win game against Hull City in 2003 was pivotal in helping keep Swansea in the Football League.

Len died from motor neurone disease (MND) last year having been diagnosed in 2018. He dedicated much of those four years to raising awareness of MND.

Last October, fans came together for a night of celebration to share their special stories about Len during his time at the club.

Organised by A Touch Far Vetched, an online fanzine dedicated to Swansea City FC, the tribute night welcomed special guests including club legends Lee Trundle, Kris O’Leary who played alongside Len and Alan Curtis, Club President. All three

shared precious memories on the night which kicked off with a minute’s applause for Len.

Fanzine Editor, Nigel Davies said: “Lenny scored one of the most important goals in the club’s history and it was a special night

getting everyone together to remember his time playing for the Swans. I loved the way he played the game and he was a real hero of mine.”

The evening raised £1,750 for the South West Wales Branch.

Nigel exchanged both messages and phone calls with Len, before his death, and was at the ground when Len returned to the club.

“There was a real poignant moment the day Lenny came back to the club after his diagnosis when Kris O’Leary led him on to the pitch and the whole stadium gave him a standing ovation. I idolised Lenny even more after he was diagnosed with MND especially for the dignity he showed when living with the disease.”

The Branch has now welcomed Lee Trundle as a patron.

Swansea City club legends at the tribute night for Len Johnrose

Some days can be really tough when you’ve had a rough night camping and the weather isn’t the best, but it makes it all worth it when you think about the awareness you’re raising for such a good cause.

Four Walk to d’feet MND

When Claire Pedrick heard of her daughter’s friend’s dad’s MND diagnosis, instead of stepping back for fear of saying or doing the wrong thing, Claire stepped forward.

Following a breakfast meeting with John Gray (who had been diagnosed with MND) and his wife Margaret, Claire

suggested taking on a sponsored walk with a difference: 12 walks over 12 months, with 10 people walking each month, and a fundraising target of £1,000 per month.

Through sheer determination and steadfastness the Letchworth Walk to d’Feet MND was born.

Claire, alongside John and Margaret, continued to organise the walk, before John died from MND last year.

In October, on a trip to Spain (one of John’s favourite places to visit) Claire along with Margaret and two other family members, Andrew and Ann Gray (John’s brother and sister-in-law), decided to walk 600km of the ancient Camino de Santiago pilgrimage.

The four completed a gruelling 600km in Santiago and smashed through an amazing £100,000 fundraising target.

Max walks Jersey in 24 hours

Max Renouf-Watkins recently walked just under 48 miles around the entire island of Jersey within 24 hours in honour of his dad, who was diagnosed with Kennedy’s disease eight years ago.

Max said: “I wanted to be able to give back to the Association which has provided vital support to my family, and many others. I also wanted to be able to give back to my dad by not just raising funds, but also awareness for Kennedy’s.”

The support that Max, his dad and the family have received from the MND Association has been so valuable, he says. His father has been able to reach out for advice when needed and always knows the Association is there to support.

“A prime example of just how amazing the Association and everyone involved within it is through Valerie Hopkins, a volunteer Association visitor, who has been an incredible support to my dad, but also my mum.”

Valerie has helped the family from co-ordinating appointments to being a regular sounding board.

Max said: “It was tough at times but seeing the sunrise over the island and knowing I was making a difference to other families like ours kept me going.”

His parents were waiting for him for a very emotional finish and to give him the amazing news he had raised more than £5,800.

Kennedy’s disease is a different condition to MND, but due to similar symptoms and impact, the Association provides support to people living with Kennedy’s disease. For more information, visit: www.mndassociation.org/kennedys

Weightlifters join Team GB gold medallists to raise the bar for research

Lift Me Up, a weightlifting event in Newton Abbot, raised almost £10,000 for the MND Association last September.

Back for its second year, the event has now raised more than £23,000 since it was created by Emily Muskett – Olympic weightlifter who represented Team GB at Tokyo 2020.

Emily, who also won gold at the European Championships in 2021 and the 2018 Commonwealth Games, wanted to use the competition to promote the sport and raise awareness of MND following her mother’s diagnosis and death from the disease during her Olympic preparations.

The event attracted competitors from around the world and they were all awarded medals, presented by 2022 Commonwealth Games gold medallist, Sarah Davies.

Emily adds: “I’m so happy with how successful and fun the day was for everyone involved, and even more elated we were able to raise so much money for the MND Association. My family and I understand first-hand how devastating MND is to the person suffering it and to those around them. Thank you to everyone who donated and all the volunteers who made the event possible. Thank you to the sponsors and British Weightlifting. Thank you Winners 2000 Fitness who helped me organise the event. I hope one day, if we all keep pushing and raise more funds for research, we might just find a cure for MND.”

Helen Mackie, Regional Fundraiser, with Commonwealth Games gold medallist Sarah Davies at the Lift Me Up event

Rise of the Facebook Challenge

Social media platforms, like Facebook, have always been a great place to connect with others.

On Facebook, we’ve been uniting communities dedicated to raising money in the fight against motor neurone disease (MND).

Last year 4,597 people joined one of our Facebook fundraising challenges, raising over £522,077 for the MND Association in total. Supporters joined the month-long challenges to complete various tasks, from 2,000 burpees to running 60 miles.

January 2023 sees our latest Facebook challenge to complete 15,000 steps every day of the month – no small task. More than 1,000 people have signed up to take part already.

Kirsty Linacre is joining in once again after playing her part in our Facebook challenges last year. She said: “This is more than just step counting. I have started the year fitter and healthier. I improved my mental health and proved to myself, and others, that anything is possible if you try. I have raised over £1,000 for the MND Association and been able to reconnect with friends, which after the last two lonely years has been amazing. But most of all I have honoured

my wonderful mum, auntie and grandad who all lost their battles to MND. Here’s to the next challenge.”

For the first time ever, this March we’ll also be asking people to take part in a less strenuous, but no less challenging, task – makeit! Participants will commit to getting creative every day for the month in return for sponsorship or selling their goods to raise money. This could be knitting something, making jam, crafting greetings cards or upcycling furniture –the possibilities are endless.

and makeit! We understand that not everyone, especially people living with MND, can take on a physical challenge like running or cycling. We’re passionate about ensuring there is something available for everyone who wants to raise money to support families affected by MND. We know how creative many of our fundraisers are and we hope this will give them an opportunity to show off their skills and raise much-needed funds.”

Association scores partnership with AFC Totton

The MND Association has a new charity partnership with AFC Totton that will directly benefit our Southampton and Winchester Group, as well as raise more awareness of motor neurone disease (MND) on the south coast.

The Southern League Division One South club, based in Hampshire, has already kicked off the partnership with a bucket collection at the Snows Stadium during a men’s first team game last November.

Charity tins are placed around the ground and will remain for the rest of the year. The MND Association logo also appears in each matchday programme and on a pitchside banner.

The club have also offered the

Clare Salter, Community Fundraising Manager at the MND Association said: “We really hope people get behind our next Facebook challenge to get creative Association tickets to the women’s team’s home games as well as opportunities to organise tombola awareness stands. Local branches and groups can also use AFC Totton’s facilities for meetings and events at a discounted rate.

AFC Totton fan Terry Hughes, who was diagnosed with MND in January 2018, is actively involved in the Group and has embraced the partnership. He also wants to recognise the carers of people living with MND and how their lives change as well.

Terry said: “By having this partnership with the club we’re making sure more people know what MND is. And it’ll help the Group have more conversations about what MND is like for the person with it and those who care for them too.”

AFC Totton fan Terry Hughes (right) with player Amy Tooley

(Left tor right): Our regional fundraisers Sharon King, East Midlands), Roger Widdecombe, East of England and Deborah Armantrading, London are encouraging more people to get involved in our Facebook challenges this year

The cost of living crisis: Support launched

A package of measures to support people affected by motor neurone disease (MND) through the current cost of living crisis is being developed.

From enhanced financial support to practical measures and signposting, the MND Association is delivering help as inflation outstrips wage and benefit increases, and energy bills hit an all-time high.

We’ve added a new area to our website including information about benefits, tips on reducing costs and links to trusted sources of further support.

An extra £300,000 is being made available by the Association for our grants programme, providing financial help to people with MND and those close to them. A new Cost of Living Support Fund was introduced in January, worth up to £350 to individuals and available to people with MND to cover increased costs, which could include utility bills, food and fuel.

The nature of MND creates a significant financial burden on those living with the disease and their families. The huge increase in energy bills in the last year along with inflation running at a 40-year high is only compounding those challenges.

For the last five years, there has been a £3,000 limit on the grants a person with MND can apply for from the Association in any 12-month rolling period. The Cost of Living Support Fund sits outside that limit.

Concerns about the impact of the cost of living are being raised with key national and local decision makers, with calls for further support being made alongside charity partners.

With other charities, we wrote to Prime Minister Rishi Sunak MP and the Chancellor Jeremy Hunt MP detailing the impact of the cost of living crisis and calling for

key benefits to rise in line with inflation.

In November’s Autumn Statement, the Chancellor confirmed that rise would go ahead, preventing a real-term loss of income for people on benefits, including those with MND.

Specific advice is available through MND Connect, the Association’s helpline. This includes assistance with signing up to the priority service register operated by energy providers. The register ensures customers receive advance warning of power cuts and are placed at the front of the queue when electricity is reconnected. According to Ofgem, around six million people across the UK are now registered. We are also in touch with energy providers to raise the concerns of people with MND and understand how any issues which arise will be mitigated.

Assistant Director of Care, Sally Hughes, said: “The nature of MND creates a significant financial burden on those living with the disease and their families. The huge increase in energy bills in the last year along with inflation running at a 40-year high is only compounding those challenges.

“We acted quickly to introduce a number of measures to help and will continue to listen to people affected by MND to understand what they need and how we can best provide that.”

Find support

We’ve created a dedicated area on our website, offering support, advice and signposting to trusted sources of further information. You can also find out more about the financial support the MND Association has available.

Visit: www.mndassociation.org/ costofliving

To talk to someone, please call our MND Connect team on 0808 802 6262. Lines are open Monday to Friday between 9am and 5pm, and 7pm to 10.30pm.

Email: mndconnect@ mndassociation.org

We want to hear from you

To make sure we’re focusing our help and support in the right way, we need to hear from you. We want to understand the challenges people living with and affected by MND are facing so we can provide the support you need.

You can share your experiences to inform our future work by taking our survey. Visit https:// www.smartsurvey.co.uk/s/ MNDCostofLiving

West Midlands MND care boosted by new post funded by the Association

Extra support for people with MND is now on hand at the Birmingham MND Care Centre, thanks to the introduction of a new role funded by the MND Association.

Beth Pudjianto has joined the team at the Centre, one of the largest of its kind in the UK, as an MND Care Co-ordinator. She’ll be working alongside the two established MND specialist nurses whose roles were originally funded by the Association and were then taken on by the University Hospitals Birmingham NHS Trust in 2020.

Beth previously worked as a speech and language therapist within the NHS for eight years and is now part of a wellestablished team at the Birmingham MND Care Centre. She said prior to joining: “I hope to create an infrastructure for consultants, clinical nurse specialists and members of the multidisciplinary team so that they are able to provide excellent patient care. I strongly believe in collaborative working and shared governance to create quality care which reflects the latest research findings.”

The new funding agreement for the MND Care Co-ordinator post will continue until at least October 2026.

Chris Bennett, the MND Association’s Head of Regional Care Partnerships –

Central and West, said: “The new MND Care Co-ordinator will greatly improve the capability of the Birmingham MND Care Centre to deliver and improve care for people living with MND. We have worked to secure this appointment since April 2020 when we handed responsibility for the MND specialist nurses over to the NHS and we are really pleased to welcome Beth to the team. Special thanks must go to MND Specialist Nurse Caroline Davies and the team at the Care Centre for their incredible work which has provided the critical foundations for this exciting next chapter.”

Over the past year, the Birmingham MND Care Centre has been working in partnership with hospice organisations to establish two new nurse-led clinics in Hereford and Stratford-upon-Avon. They, along with another in Solihull, will offer important opportunities to bring care closer to where people live.

The costs of caring in Northern Ireland

Representatives of the MND Association attended the launch event of Carers NI’s new report The State of Caring 2022: A snapshot of unpaid caring in Northern Ireland.

The report offers a glimpse of the challenges unpaid carers are facing in Northern Ireland and concludes that robust policy reform needs to happen to address such issues.

The report provided the context for our in-person Carers Rights Day event attended last November alongside Carers NI, and other charities, which focused on the theme of ‘Caring Costs’.

Many carers experience significant financial costs when caring for their loved ones, with many using their savings or income as a way to afford care services and equipment. Caring can also take a major toll on their wellbeing, the quality of their relationships and their employment opportunities.

The current cost of living crisis is only worsening the financial and personal implications carers face, which is why the event was key in empowering carers to understand their rights, and raise awareness among Members of the Legislative Assembly (MLAs) on the need to improve support for unpaid carers of people living with MND.

Nearly 15 MLAs from across the political spectrum attended, with Kellie Armstrong MLA opening the event. We were able to

raise greater awareness of the issues MND carers face, and the disease as a whole. Additionally, many MLAs offered to continue supporting us and our work around our Promises to the MND community.

Left to right: Patrick Malone, Senior Policy and Public Affairs Adviser, Harry Harvey MLA and Clare-Anne Magee, Head of Regional Care Partnerships

Beth Pudjianto MND Care Co-ordinator, Birmingham MND Care Centre

Update on our Promises –one year on

This time last year, we launched our five ambitious Promises, developed alongside members of the MND community. The aim was to build on 40 years of progress while giving us a renewed focus to work faster and fight harder to strive for better.

The first half of last year was dedicated to communicating the Promises to the MND community, volunteers and our staff, setting up our Promise teams and founding projects.

This work gave us the chance to reach into our networks, build new partnerships and develop new relationships to help us drive this work.

Now, just a year on, we have 18 projects up and running with more in development. All feed directly into our Promises which drive everything we do.

You can read more about two of these projects elsewhere in Thumb Print. See page 16 for information about new digital tools available to our volunteers and page 35 for details about the evaluation for our support grants.

Progress on each Promise so far includes:

PROMISE 1 – We won’t rest until MND is treatable and ultimately curable

Completion of the roll out of the MND register is progressing well. The register holds data from people living with MND, providing vital information to researchers and those involved in shaping care and support services. Data is gathered (with permission) by Care Centres and clinics, with 42 Care Centres across the country now supporting the MND Register. Our teams are working with a further eight centres to secure their support.

A review is underway to understand where people with MND live and how this affects their access to clinical trials. We are working to identify which areas have access to research trials, where there are gaps and will then look to address the causes.

We are also reviewing the NICE guideline to identify gaps in current guidance. We’re gathering evidence to make recommendations.

PROMISE 3 – We won’t rest until every day with MND counts

We are completing an evaluation of our Support Care Grant Programme to make sure it is effective, reaching the right people and giving them what they need. This has so far included:

• A survey of health and social care professionals and people living with MND who have and haven’t received grants

• Analysis of survey responses to inform recommendations for changes required to the programme

PROMISE 4 – We won’t rest until you are heard

Our integrated marketing campaign is being developed to raise awareness of MND and enhance fundraising opportunities. We are in the early stages of planning the project and securing the expertise to deliver the campaign.

PROMISE 5 – We won’t rest until no one faces MND alone

Our new Community Engagement Programme seeks to understand the needs of different communities and how we can extend our reach into a wide range of communities. We want to remove perceived and actual barriers to participation by people living with or affected by MND, volunteers, members and others at regional and national levels. Our Branches and Groups are collaborating with us on this important work.

We want to ensure that our partner Care Centres and Networks are working well for all people living with MND, regardless of for example mobility, family support structures, wealth or religion.

There are some places where people with MND can’t access the multidisciplinary care they need. We are changing that by focusing our efforts on 14 areas of greatest need across England, Wales and Northern Ireland. Already we have new partnerships with the NHS in four areas and expect a further six to be in place by mid-2023.

We are developing an Inclusion Learning Programme for Association volunteers and staff so that we are all equipped to provide the best possible support to all people living with MND and make our volunteering and workplaces welcoming and inclusive. The initial content has been completed and is being trialled with both volunteers and staff.

PROMISE 2 – We won’t rest until everyone gets the care they need when they need it

Tuk Tuk adventure in India

Ian Betley from Carnforth in Lancashire recently returned from an epic Indian adventure which saw him drive more than 3,000 kilometres from Kerala in the south to Rajasthan in the north in a Tuk Tuk, something that Ian describes as ‘a glorified lawnmower.’

The journey included breakdowns, illness, being stopped by the military and almost being run off the road by a truck. But that didn’t stop Ian and his friend Richard, pictured, as they powered through to finish their journey.

Speaking about the challenge, Ian said: “I lost my dad to MND when he was 52 and as I reached the same age I wanted to do something to commemorate this and raise money and awareness around MND. The journey was incredibly tough at times, not least due to the size of the Tuk Tuk. I should probably have checked I could actually fit in it first, but we kept going and it was an experience I will never forget. I am proud to have raised so much and got so many more people talking about MND.”

Ian has raised £2,687 for the MND Association so far and is looking to do even more in the future, but for now he is resting after his epic adventure.

Volunteer retires after 20 years

Since 2002, Jennie Lewis has dedicated her life to volunteering for the MND Association.

After 20 years, Jennie has now decided to take a well-deserved retirement from volunteering and leaves behind a legacy within the Isle of Wight Branch.

Her mother, Mavis Summerfield, died from motor neurone disease (MND) in 2002 and Jennie decided to get involved shortly after.

“When you have lost a dear loved one to MND you want to do what you can to make a difference and help other families,” she said. “Just seeing a person living with MND smile or hold out a hand in thanks for an event or experience is a memory I will treasure.”

For two decades, Jennie has organised numerous fundraising events raising more than £30,000 for the Isle of Wight Branch. These included an annual fundraiser as a tribute to Mavis, which Jennie says was always a stand-out memory each year.

“I joined the Isle of Wight Branch as a committee member and tried to get involved in as many activities as possible to help raise funds for the branch. I became more involved in publicity

and engaging with local companies to develop long-term relationships for sponsorship and grants.

“My sister, Doreen, and I organised the annual fundraiser for our mum and this took the form of an antiques fair at Northwood House, West Cowes. Being on the Isle of Wight, there is a very strong community spirit so it has been rewarding to help people on their journey with MND.”

Other fundraisers included a sponsored silence, a race night, as well as collections at various shows on the island – often wearing orange and blue tutus to stand out.

Jennie took over as Chair of the Isle of Wight Branch in 2016 and set out to introduce even more events aimed at supporting people living with MND.

“We’ve had a number of lunches and afternoon teas plus an annual boat trip in specially adapted boats – one year we even saw dolphins swimming near The Needles. The boats are fully adapted for wheelchairs and people living with MND were able to steer the vessels.”

She now encourages anyone thinking of getting involved in volunteering for the Association to do so.

“If you can only spare a small amount of time or want to give a small donation, it all helps.”

Jennie Lewis is retiring after 20 years of volunteering for the MND Association

If you can only spare a small amount of time or want to give a small donation, it all helps.

Chaat and Chai to remember much-loved community member

Harish Thakrar was a dedicated fundraiser for the MND Association before he died from motor neurone disease (MND) last year.

After his death, Harish’s family were keen to continue his good work and decided to commemorate his birthday with an event which encompassed his favourite cup of chai and the food he loved, with the people he loved – ‘Chaat and Chai’.

A much-loved member of the local community, Harish was a yoga instructor and an accountant who devoted his time and skills for free to several charities, so it was not surprising that the event was a sell-out.

As well as family and friends, members of our Northampton Branch were invited to the event. Harish’s daughter-in-law and two elder grandchildren delivered a talk about Harish and MND, with a backdrop of photographs celebrating his life.

Kirti, Harish’s wife, said: “It brought tears to my eyes to see the overwhelming support from family and friends. We raised £1,876 on the day, with friends continuing to donate on his tribute page which has reached over £12,000. Nearly 100 people were present at the event and it was so wonderful listening to the stories of how Harish touched the lives of so many.”

Eating and drinking with MND

When living with motor neurone disease (MND) maintaining calorie intake is important if you begin to lose weight.

But, for so many people, food, cooking and mealtimes are also a pleasure or a hobby.

So, what can you do if MND starts to affect your mobility? Perhaps standing at the kitchen counter or using kitchen implements is starting to get tiresome and the process of cooking is taking longer? The way you chew and swallow may also be changing, making you alter the foods you eat and drink. If you enjoy eating out, you may want to find tips about this as MND symptoms progress.

These are the sort of issues raised by our members and it was suggested a cookbook designed specifically for people living with and affected by MND could help.

The cookbook is spiral bound so it lays open flat on the page you want. It has recipes, but also a wide range of topics associated with MND and eating. It starts by looking at the changes you may experience and how your diet may need to adapt. There are hints and tips on how to use thickeners to make swallowing fluids easier, how to increase your calorie intake,

moulds for shaping pureed food and how different textures can affect chewing and swallowing.

It includes practical guidance about taking medications, tips on eating in a social setting, how to get the food you need on holiday and tube feeding.

The guide also contains easy-swallow recipes and appealing, nutritious and easy to make meals including meat, fish, vegetable dishes and puddings. It’s a unique cookery guide designed with and for people affected by MND.

Care information update

Revised information sheets:

10F – Personal health budgets

7B – Tube feeding

Update on our latest booklet

As mentioned in the previous edition of Thumb Print, we have been working on a new booklet called Types of Care. This small guide provides an overview of the different types of care available for people living with MND. Now in the final stages of testing and design, we are planning to launch early in 2023. Our helpline MND Connect are also available to offer guidance on this subject.

“One pub we go to always has a table for wheelchairs. When you find somewhere like that, you go back again.” Chris, living with MND

“How about a cookbook, with recipes that taste just as good blended as they do un-blended? MND families could share their recipes, stories and help each other out with handy tips and nutritional information to encourage others.” Becky, affected by MND

Oscar walks for his grandad

young boy has completed a five-mile walk for his grandfather after he was diagnosed with motor neurone disease (MND).

Six-year-old Oscar Southey walked five miles around Waddesdon Manor in Buckinghamshire last October to support his grandfather and raise money for the MND Association.

Oscar initially set himself a target of reaching £500 and went on to raise more than £2,500. His grandfather, Paul, was diagnosed with MND in December 2021.

Laura Southey, Oscar’s mother, said: “Oscar wanted to do the walk to donate to the Association and help people like his grandad Paul who are living with MND. We are super proud of him.”

David

"I'm leaving a gift in my Will because I want to see an end to MND."

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More grant support than ever

2022 was a big year for our financial grants programme, as we supported more people affected by motor neurone disease (MND) than ever before.

We also carried out a review of the service to ensure it continues to meet the differing and complex needs of people living with MND, while being fit for purpose in the current financial landscape.

As a result of our findings, we will be making some improvements to our current grants programme over the next few months.

Our evaluation started in June last year and has involved members, branch and group volunteers, people living with and affected by MND, and MND Association staff.

We have carried out surveys, undertaken benchmarking research, reviewed external reports, analysed data and held focus groups to gather feedback on the programme.

A number of key themes have emerged as part of the review, including the need for development of the grant application forms and for more promotion of the financial grants that are available.

Recommendations for improvements will soon be presented to the MND Association’s Care Committee and changes will then be made to the programme to improve our support for people affected by MND in 2023.

At the time this edition of Thumb Print went to print in December 2022, we had processed 3,170 grants, totalling a massive £1,436,432. This is an increase of 23% compared with 2021.

We helped 1,228 people living with MND through our support care grants, totalling £784,179, with the highest volume of applications coming in for riser/recliner armchairs, followed by stairlifts.

Jane Revell was diagnosed with MND in October 2020 and last year received a grant towards a bio bidet.

She said: “I have no use of my left arm and my right arm has become very weak. This has impacted on all forms of my daily activities. I now need help with washing, dressing and eating – in fact, everything that you need your arms and hands for. I have been so pleased with the bio bidet. The washing and drying facility has enabled me to maintain my independence with my personal hygiene.”

We also supported 797 people living with MND with Quality of Life grants to help fund holidays, complimentary therapy, home improvements and even football season tickets in the case of Dale Moorhouse.

Football is something of a family tradition for Dale, who was diagnosed with MND in 2014. He started to watch his beloved Huddersfield Town with his dad when he was just six-years-old and now takes his own son Ben and grandson Xavier along to the matches.

Dale received a Quality of Life grant towards season tickets for the three of them, and he said: “Xavier is six and is football mad. He has been coming with us for two years now – he knows all the players and positions they play. I feel that it is important we go together to games, not only to keep a family tradition, but I feel time spent with my son and grandson is very important. To be able to attend games is a break from appointments and meetings and I can forget all about MND for a couple of hours. MND has affected my life in a big way as I can no longer stand

and cannot do the things I want to do.”

Support through our grants programme included 269 emergency grants towards food shopping and utility bills.

One of those receiving an emergency grant was 67-year-old Janet, who was diagnosed with MND in January 2021.

She said: “Every day is a challenge for me with MND, it affects every aspect of my life. The emergency grant helped towards the spiralling energy costs and all the additional costs I have because I am ill.”

We awarded 206 Young Person’s grants for people under the age of 18, which mainly helped to fund hobbies, holidays and educational courses.

We also supported 253 carers with £119,963 in grants towards holidays, hobbies and social activities, among other requests.

We would like to extend our thanks to the My Name’5 Doddie Foundation, Challenging MND, the Darby Rimmer MND Foundation, the Association’s branches and groups, and all of our fundraisers who continue to provide vital support and donations towards our grants programme.

For an update on changes to our current grants programme visit: www.mndassociation.org/supportand-information or for further details about how to apply for an Association financial grant, visit www. mndassociation.org/support

Thank

to

Making Dad proud: “I wanted to raise money and awareness of MND as well as doing something to make my dad proud.” This is exactly what Sally Agar did. On her dad’s 73rd birthday, Sally completed a tandem skydive and raised an incredible £3,245. Sally says: “I wanted to choose a challenge that was totally out of my comfort zone, something people wouldn’t expect me to do. I’m terrified of heights so a skydive seemed like the perfect choice!” Huge well done Sally!

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Peak District Challenge: Sam took on the gruelling 100km Peak District Challenge last July, as part of his year of challenges, in his Thirty7 year, and what an adventure it was. In third place at the halfway point, Sam was doing amazingly well, but then the cruel cramps kicked in. Determined to complete, in pain, in intense heat, and tiring rapidly, Sam’s sheer determination and thoughts of his dad, who died from MND in December 2019 and others affected by this cruel disease, got him to the finish line.

Summer Fayre in Yorkshire: In August, the Yorkshire Coast Group hosted a Summer Fayre at Sewerby Methodist Church in Bridlington. Their tombola, book stall, crafts and toy stall raised £615. They were helped on the day by two special guests, our former CEO Sally Light and her dog Jack!

Snooker fundraiser: A fantastic day was had by all at Nigel Brasier’s annual snooker tournament in Spalding. Nigel set up the event way back in 2015 as his first fundraiser after receiving a diagnosis of primary lateral sclerosis (PLS) in 2013. It’s now a firm favourite in the calendar of local snooker players, sells out every year and so far has raised over £20,000 for the local Lincs MND Group. This year’s tournament was another massive success raising £1,970 with Phil Spencer lifting the trophy after beating Nigel in the final 2-1.

Climbing

In loving memory of Rob: In May last year, Harriet, Mollie, Simon, Adele and Antonia took on the Birmingham Half Marathon in loving memory of their dad Rob Cater, who died in July 2020, having been first diagnosed with MND the previous April.

The family continue to do all they can to raise much needed funds and awareness for the MND Association and have raised an amazing £6,106 by taking on the half marathon.

Kilimanjaro: In October 2017, Aimie’s Grandpa was diagnosed with MND. Since his diagnosis Aimie has been inspired by her Grandparents as they support each other and help as active members and fundraisers for their local group. Aimie decided to climb Kilimanjaro as a personal challenge and on behalf of those with MND who can’t take on such a physical challenge. As well as successfully reaching the summit, Aimie has raised £1,200 for the Yorkshire Coast Group.

Harry’s heartache turning positive:

When Harry Bassant’s dad, Eddie, died from MND last year, he wanted use his heartache in a positive way. Harry decided to walk 100 miles on the South Downs Way, where he raised £2,000 for the MND Association.

At the finish point, Harry said he could see his dad smiling. “I want my dad to be the reason I succeed, not the reason I fail. He wouldn’t want his son to be upset or devastated.”

Harry said the eightday walk itself was exhilarating. “I got emotional at points along the journey but the support I received and the generous donations were pushing me on, with MND in my mind and my dad in my heart.” Harry’s journey can be viewed on his YouTube channel Happy Trekking! where he talks about his dad and the journey they faced together with MND.

Barty Party at village hall: A huge thank you to Janet, John and the entire team who organised the ‘Barty Party’ to support the Association at Pilling Village Hall in Lancashire. It was an incredible night which brought together people from across the community, supporting John who is living with MND. Through donations, raffles and auctions the night raised over £40,000 which will be used for MND research and raising awareness.

Go-Karting for MND: Bill organised the second Karting4MND go-kart day at Thruxton centre with 18 teams coming together to kart in memory of his brother Gideon Williams. The day was incredibly special and the perfect way to celebrate Gideon’s life. Over £4,700 was raised by all the teams on the day and a special auction of Gideon’s motor sport memorabilia.

Connecting the UK to El Salvador: After losing her dad on Christmas day 2021, Clare’s friend Rachael persuaded her to join her in taking part in the Solihull Half Marathon in August to pay tribute to her dad. With Clare living in El Salvador and Rachael in the UK, and 5,300 miles between them, it was a way to stay connected and for Rachael to support Clare through her grief. They smashed the run and raised almost £1,000 to support other families affected by MND.

Walking the length of Cornwall: James Murton and his wife Milena took on the unbelievable challenge of walking the whole length of Cornwall last September in one go. The 90-mile challenge was made harder by James, a firefighter in Land’s End deciding to do the distance in full firefighter uniform with breathing equipment adding an additional 30kg weight. The couple completed the challenge in just over 33 hours and have raised over £3,000 in memory of James’s mum.

Lynsey cycles Land’s End to John O’Groats: In September, Lynsey Newbery completed the biggest cycle challenge possible – the Ride Across Britain, from Land’s End to John O’Groats, in memory of her dad, Peter, and friend Gilly Lewis who both died from MND. 980 miles and nine days later, she had raised £5,185.

Great North Swim for sister: In March last year, Cathy took part in the Great North Swim in memory of her sister-in-law, Jane Murphy who died from MND. Cathy said this inspired her to help and she raised £800. “Participating in the Great North Swim in the iconic Lake Windermere was tough but not as tough as those who have MND to face every day. As I battled the wind and waves, I gave myself a talking to, knowing that Jane would be pushing me on. The event was amazing – an incredible experience.”

Photo: Jakob Ebrey

Members’ letters

If you have something you would like to share with other members of the MND community, we would love to hear from you. Letters, which must include your full address, can be sent via email to editor@mndassociation.org or posted to Your letters, Thumb Print, Francis Crick House, 6 Summerhouse Road, Moulton Park, Northampton, NN3 6BJ Please note that letters may be edited. If you are including photographs please ensure you have full permission before sending.

Dear Editor,

Last February, my husband Peter and I celebrated our 50th wedding anniversary – an occasion we had hoped and prayed for despite being diagnosed with MND in April 2020.

Our special day was spent in St.Luke’s Hospice with our daughter Jemma, her husband James and our two eldest grandchildren, Ella and Gracie, plus three close friends. They had brought special food, which Peter enjoyed, and champagne but he had to drink it through a straw. He was offered a room in that wonderful hospice when it was decided he needed 24-hour care – even though he had an immense amount of help from the MND specialist nurses, Home Instead carers, home ventilation, occupational therapists, nutritionists, as well as very supportive neighbours.

Selflessly, my beloved husband didn’t want me to have the responsibility of caring for him when there was no carer around at night, nor at certain times of the day. I found it hard not seeing him every morning nor kissing him goodnight.

Our daughter Beth came over from Australia in January, as he wasn’t expected to live more than two or three weeks. But he thrived at St. Luke’s and loved it there. He began to enjoy food orally instead of having liquid food through his peg/ RIG which had been inserted whilst in Derriford Hospital.

After seven weeks at St Luke’s he moved to move to a nursing home because of the general improvement in his health.

Peter had been a very active man –enjoying long walks with our springer spaniel, Jake, gardening at home, as well as growing vegetables in our ‘plot’ – a piece of ground kindly given to us by friends. He went for a medical check-up in September

2019, which culminated in many hospital appointments with numerous tests, but no diagnosis was forthcoming until he went into hospital for observation in March 2020. I had to literally drop him off outside the entrance with all his belongings, but was not allowed to settle him in because of the Covid-19 virus.

I can’t emphasise enough the help and support that is available for sufferers and their families through the MND Association. As a family, we are so grateful for all that was done for Peter. He never complained, accepted his disability so graciously, and so appreciated those who cared for him. He couldn’t move his arms or hands; but managed to operate the special call alarm with his thumb. He didn’t lose his voice, nor his great sense of humour. His brain was extremely active, but his physical body was in a very poor state. In his helplessness, he prayed constantly for family and friends.

Peter had a strong Christian faith and believed he would be going to see his Saviour, Jesus, when he died.

My beloved husband passed away peacefully on 13 May 2022 at St. Francis Nursing Home in Plympton, with our daughter Jemma, husband James and brother Chris at his bedside. We all miss him terribly, but grateful he is no longer suffering.

Our daughter, Jemma, has recently taken part in the Bath Half Marathon raising over £2,000 for the Association in memory of her dad.

One day we hope and pray a cure will be found for this terrible disease, but in the meantime, as a family, we will support the Association as much as we can.

Sue Waterfield

Dear Editor,

I feel compelled to write, after yet another celebrity being in the media diagnosed with ALS. Fast onset MND seems to be well publicised but having had slow onset for at least 12 years, I feel the need to highlight awareness that being diagnosed does not have the same consequences for everybody.

Myself, I have slowly deteriorated, losing muscle and therefore proper use of my legs, arms and hands and I am confined to a motorised wheelchair, but I thankfully can still eat and talk without too much difficulty.

It’s incredible that Rob Burrow is able to be so positive and he has really grabbed the nation’s attention in order to highlight this awful condition but I wonder how many thousands of people are out there suffering symptoms and haven’t been diagnosed, therefore are not receiving any help or support and don’t know where to turn? I was one of those people for five years, before being referred to a specialist unit.

Having had a diagnosis since 2016, I am living independently but I do have daily care which is available to me 24/7 if/when I need it. I also have a dedicated specialist MND nurse/co-ordinator who regularly visits me and I am under the care of the specialist MND unit at the John Radcliffe Hospital, Oxford for which I’m extremely grateful.

I hope this gives food for thought for those of us in the rare 5% slow progression bracket.

Mrs Audrey Keen

The MND Association is committed to minimising impact on the environment wherever possible and are pleased to introduce their potato starch mailing wrapper for Thumb Print magazine. It’s every bit as durable as polywrap, but much more environmentally friendly. Our new potato starch wrapper is derived from food industry waste and the energy used to manufacture it is less than that used to manufacture plastics. It is GMO free and doesn’t contain any plasticiser. The wrapper is 100% biodegradable confirms to BS EN 13432 –the standard for Industrial Composting. It is also certified by TUV (a certification body authorised by European Bioplastics), as fully Home Compostable, which means that it will decompose to nutrients for the soil in only two months.

Thumb Print has a new editor

I’m Ross Armour and I joined the MND Association as the new editor of Thumb Print last October.

This is an exciting new role for me and I am looking forward to meeting many more people across the MND community in the years ahead. My background is in journalism – I started my career in print media before transitioning into communications, where I worked as a public relations officer for a leading childcare company for six years in my previous role. Thumb Print is an important voice for the MND community and I want to hear from you, on both your stories and ideas for the magazine, so please get in touch by email via editor@mndassociation. org or @mndeditor on Twitter.

MND Matters

MND Matters is the Association’s monthly podcast, sharing stories, advice and information from and with members of the MND community and beyond.

Listen to episodes on our website at www.mndassociation.org/ mndmatters, search MND Matters in your chosen podcast provider or scan the QR code.

Episode 19 – Travelling with MND

In this uplifting episode, Ken Blackburn, who is living with MND, and Antonia Lee-Bapty, Managing Director at the disabled access charity Euan’s Guide, share their top tips for accessible days out.

Episode 20 – NHS Continuing Healthcare

In this episode, we speak to Beacon CHC to understand how to access NHS Continuing Healthcare. Dave Setters, who is living with MND, and Marian Ward, whose husband died from MND, also join us for a frank discussion on navigating the system.

Episode 21 – Kev’s Ultra 7 in 7

In this special episode, we went behind the scenes and followed our patron, Kevin Sinfield, as he completed his Ultra 7 in 7 challenge.

Episode 22 – Sally Light

Join us as we look back on Sally Light’s 10 years as Chief Executive of the MND Association. Sally answers questions from the MND community and reveals some of her personal highlights.

If you have an idea for a future episode or would like to get involved, contact the MND Matters team at communications@ mndassociation.org

The Motor Neurone Disease (MND) Association

We improve care and support for people with MND, their families and carers, and fund and promote research that leads to new understanding and treatments.

We also campaign and raise awareness so the needs of people with MND and everyone who cares for them are recognised and addressed by wider society.

As a charity we rely on voluntary donations. Our vision is a world free from MND.

Social media

Online forum A place for people affected by MND to share experiences and support each other. https://forum.mndassociation.org mndassociation mndassoc mndassoc

MND Connect

Our MND Connect helpline offers advice, practical and emotional support and signposting to other organisations.

Open Monday to Friday 9am to 5pm and 7pm to 10.30pm.

0808 802 6262 mndconnect@mndassociation.org

Membership

To receive a regular copy of Thumb Print, call 01604 611860 or email membership@ mndassociation.org

If you would prefer to receive your copy of Thumb Print under plain cover please let our membership team know. Call 01604 611860 or email membership@mndassociation.org

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