Thumb Print - Autumn 2022

IN THIS ISSUE:

PAGES 4-5

MND EnCouRage UK

Our highly successful early researcher event held in August

PAGES 6-7

‘It’s been a privilege’

Retiring Chief Executive looks back at the last decade

PAGE 11 Cannes Lions Winner

E-book I Will Always Be Me scoops top prize at prestigious international festival

PAGE 19

UK clinical trials

The latest drug and treatment trials now recruiting

PAGES 20-21

The right MND care A guide to managing symptoms and accessing the care you need

On the cover: Our Royal Patron, The Princess Royal talks to Northampton Branch member Rachel Thayanithy who is living with MND and her husband Ganesh at the recent MND EnCouRage UK event.

Thank you for all your support

At the end of December, after ten years of having the privilege of being the Chief Executive, I am leaving the MND Association, and so this is my last Thumb Print welcome message. This will be a significant change for me, and a positive change for the charity to have a new leader to push our work on even further.

Of course we know change isn’t always welcome. For people living with MND, as the disease progresses, adapting and managing change can become a defining part of their condition.

One of the changes faced by 80% of people with MND is the loss of their voice. In my early years with the Association, I experienced the process of voice banking. It used to be a gruelling process, taking around 40 hours. Now there’s an alternative, thanks to our partnership with some of the biggest global technology companies through our Next Generation Think Tank. Read about our first-of-its-kind e-book on page 11.

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.

Editorial and advertising enquiries: Telephone 01604 250505 Email editor@mndassociation.org

If you have comments or feedback about the magazine and its content, please do not hesitate to get in touch. Thumb Print is available to read online and as a downloadable pdf at www.mndassociation.org/ thumbprint

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.

Fostering collaborations and allowing the exchange of ideas and knowledge is also an important part of our research strategy. On pages 4 and 5 you can read about our first MND EnCouRage UK event, aimed at inspiring and supporting early career researchers (tomorrow’s research leaders). Researchers heard from established scientists and clinicians, networked, built new collaborations, and, most importantly met people living with MND. We were honoured to welcome our Royal Patron HRH The Princess Royal as our special guest. Just a few weeks later, as Thumb Print was going to print, the death of Her Majesty The Queen was announced. As an Association, we sent our condolences to The Princess Royal and, of course, our sympathies are with all those affected.

Recently we reported the death of a great friend of the MND Association. Our patron, and former President, Professor Sir Colin Blakemore, who spent so many years of his life supporting our charity, died from MND in June. Our Director of Research Development, Dr Brian Dickie, worked with Colin for over 15 years and writes a moving tribute to Colin on page 16.

Thank you for all your support over the years. It has been such a pleasure and privilege to work alongside you. Together, we will beat MND. I leave certain of that.

Sally Light Chief Executive

Our Royal Patron attends ‘inspiring’

In July, our Royal Patron, HRH The Princess Royal attended MND EnCouRage UK, an event aimed at inspiring researchers in the early stages of their careers to continue focusing on MND.

The first in-person event of its kind, organised by the MND Association and hosted at the University of Northampton, provided the opportunity for early career researchers (ECRs) to meet people with

MND and hear first-hand why their work is so vital.

During her visit, The Princess Royal spent time speaking to the researchers and people affected by MND, who shared their own experiences and their views on MND research.

Nick Cole, Head of Research at the MND Association, said: “Many of the ECRs who attended are funded through the

I told the researchers I hoped they enjoy their career in science – and that one of them could be a Nobel prize winner if they find a cure for MND! The ECRs heard from patients and pioneering scientists, reinforcing their decision to focus on our disease but also integrating them into the UK MND research community.

Lee Millard, who has MND and who spoke at the event

The MND EnCouRage UK event was such an interesting day. It was so wonderful to hear the huge variety of aspects of MND being studied by the young researchers. I learned so much and got a glimpse of the enormous challenges in finding treatments for MND. Princess Anne showed genuine interest and understanding.

Margaret Waller, who is living with MND

Thank you to @mndresearch for organising MND EnCouRage UK. It was an excellent experience, learning what other ECRs are researching, engaging with people with MND and learning their stories, expanding our networks, and developing our skills.

Dr Greig Joilin, MND Association funded Research Fellow, University of Sussex

Had a fantastic time at MND EnCouRage UK. Such a wonderful experience talking with other ECRs and hearing from Lee Millard [who has MND], who has finally got me on Twitter! Big thanks to @mndassoc, @mndresearch and all those involved.

Leon Crowley, MND Research Assistant, Kings College London

‘inspiring’ MND EnCouRage UK

Association’s research grants programme and we hope they will become our future leaders in MND research. Seeing researchers really understanding the importance of their work directly from people with MND – and people with MND seeing the passion of the researchers working to help them - was inspiring.”

Feedback from the event has been entirely positive. Dr Roisin McMackin, who

is funded by the MND Association and works at Trinity College Dublin’s School of Medicine, said: “I had a brilliant time at the MND EnCouRage UK event - discussing the ongoing research with people with ALS and their families has been extremely helpful, it’s so vital this community is part of the research conversation. The career advice from MND research leaders was very useful and inspiring.”

Dr Scott Allen, a guest presenter from the University of Sheffield, commented: “Collaboration in MND is the future… we’re better together as a collective and we hope this event will result in long-lasting collaborations within the MND community.”

Please visit our MNDResearch blog to read more about MND EnCouRage UK 2022. Plans are now underway for next year’s event.

Nick Cole, Head of Research at the MND Association

What a fantastic day at the MND EnCouRage UK event, meeting early career researchers and hearing about the amazing work being done to help #enALS. Also a pleasure to meet Lee Millard and listen to Prof. Ammar

Al-Chalabi - definitely good news on the horizon in treatment of MND.

Rich Crocker, former police officer and living with MND

Feel inspired after attending MND EnCouRage UK. Brilliant speakers. Great networking. Learnt loads. Massive thank you to the people with MND and their families who attended. Your insights, stories, honesty and humour made the event even more special.

Sean White, dietitian and NIHR clinical doctoral Research Fellow in Sheffield

A fantastic couple of days at the inaugural MND EnCouRage UK. Such a special opportunity for people living with and affected by MND, ECRs and leading MND researchers to come together in one room to discuss research and future collaborations!

Sarah Roscoe, PhD student at SITraN investigating nutritional biomarkers in MND

Seeing researchers really understanding the importance of their work directly from people with MND - and people with MND seeing the passion of the researchers working to help them – was inspiring.

“It’s been a privilege”

After 10 years at the helm, our Chief Executive Sally Light is preparing to leave the MND Association. Here she shares some of her highlights.

Just like that, ten years have gone by, ten of the most rewarding, challenging and inspiring years of my professional life.

There have been ‘pinch yourself’ moments: sitting at a table across from Professor Stephen Hawking and Princess Anne at Buckingham Palace, interviewing my hero, adventurer Sir Chris Bonnington, about his experience of caring for his wife Wendy, who had MND, and an unforgettable birthday spent attending the premiere of A Theory of Everything

But what will stay with me is the courage and spirit of those affected by this most cruel and devastating of conditions, and the strength of the MND community.

Throughout my career I’ve sought to work for those neglected, ignored or left behind. I saw how research into MND was chronically underfunded and how people living with the condition were often left to cope alone.

At the same time, I saw how this relatively small charity was punching well above its weight – it organised the world’s leading MND research conference, bringing together the best and brightest minds from across the globe!

Power of the MND community

From day one I made it my mission to meet with volunteers from every branch and group in England, Wales and Northern Ireland.

Over two years and many miles, I saw what is one of our greatest strengths. We’re a national charity, with international reach but, thanks to our branch and group network, we’re embedded within local communities.

Once you see the impact of MND, you never forget it. Many of those who’ve lost a loved one to MND dedicate the rest of their lives to fighting back, including some of our founding members who are still actively involved.

We are at a very different place now than when I joined the Association. Back then care was patchy at best. After years of campaigning, the NICE Guideline on MND was published in 2016,

making MND the rarest condition to have its own guidelines, and improving the care people received.

Our resources were focused on people living with the condition. Now, our reach extends to families, carers and bereaved carers. I’m especially heartened to see the expansion of our children, young people and families support, that includes dedicated staff and volunteers, information and a counselling service.

Our investment in research had plateaued. Now, we’re one of the largest global charitable investors in MND research, with over £16 million currently invested in around 80 projects.

Little was known then about the disease. Now, we’ve identified a number of causative genes and researchers believe the next few years will see the emergence of treatments.

Once you see the impact of MND, you never forget it. Many of those who’ve lost a loved one to MND dedicate the rest of their lives to fighting back.

A number of factors contributed to these step changes, not least the global phenomenon – the Ice Bucket Challenge (IBC).

When I first heard about the IBC I was on a contemplative walk in northern Spain. Contemplation turned into huge strides as I hurried to get back to the action! I’ll be forever proud of how volunteers and staff worked together to make the most of this opportunity. We received just over £7 million in donations, from nearly one million people, in three weeks. That year we were no longer a £13 million charity, but a £25 million one.

It was the most wonderful, once-in-a lifetime moment, a real MND community success. And it was our members who decided the unexpected funding should be spent on research, to bring hope.

Enjoying a fundraising evening with Nadine and Len Johnrose, Chris Broad and patron Charlotte Hawkins

With Ken Milne and Chris Smith at Headingley, after our patron Kevin Sinfield OBE’s epic 101 mile run

Reconnecting with Association founders Colin De’Ath and Jenny Elston at a Parliamentary reception

privilege”

So, we invested in new research collaborations and trials, including MIROCALS, AMBRoSIA and Project MiNE.

Historically we’ve struggled to reach beyond the MND community and gain wider public support. Over the last four years, three sportsmen have helped change this. Scottish rugby union player Doddie Weir was diagnosed with MND and set up his own foundation in 2017. Then, in 2019 Rob Burrow MBE, who is living with MND, and his friend and former Leeds Rhinos team-mate Kevin Sinfield OBE, raised huge sums, awareness and understanding.

Collaboration

We’ve always said it will take collaboration to beat MND – the United to End MND campaign is a powerful example.

We joined forces with people living with MND, leading researchers, MND Scotland and My Name’5 Doddie Foundation, to call on the government for greater research investment. Again, the MND community came out in force. Thanks to those collective efforts, the government committed an additional £50 million to MND research.

There are many lessons I’ve learnt at the Association including the importance of being impatient – people with MND don’t have time to wait. On a more philosophical level, I’ve learned tomorrow isn’t promised to anyone and we must make the most of life while we have it.

I’ve said goodbye to many wonderful people – patrons, trustees, volunteers and supporters. While it’s important to celebrate what’s been achieved, it’s not enough. It never will be until we end MND. I hope, as I leave the Association, that ambition is getting nearer.

I have loved being part of this very special charity and I’d like to thank the senior leadership team and trustees for their wisdom, judgement and guidance, and staff, volunteers and supporters for their passion and dedication. It’s been a privilege to be part of this community.

While this is a goodbye, it’s not the end. I will continue to support the charity and you may see me pulling on my wellworn MND Association fundraising vest as part of #TeamMND.

There are many lessons I’ve learnt at the Association including the importance of being impatient – people with MND don’t have time to wait.

Chatting with guests Lucy Hawking and Prof. Ammar Al-Chalabi at the annual Research dinner

Greeting our Royal Patron, The Princess Royal at the launch of the Oxford Care Centre

London to Paris cycling challenge with #TeamMND, raising £45,000 for the Association

Campaigning in coalition

Our aim is to ensure people with MND get the support they need so they can enjoy a better quality of life.

By working closely with other charities with similar aims and pooling resources we can be more effective. Using our combined knowledge, experience and contacts, we seek to ensure Government policy reflects and meets the needs of all disabled people.

Disability Benefits Consortium

We need a fairer benefits system that contributes towards tackling disability poverty. As a member of the Disability Benefits Consortium, we are working with over 100 charities including the MS Society and Scope to transform the benefits system to ensure it adequately supports disabled people.

We want the benefits system to be informed by the needs and experiences of all disabled people, including those living with MND, to reflect the reality of the challenges that they face while also recognising their individual needs.

In recent months we have pressed senior civil servants on planned migration of legacy benefits to Universal Credit, and we organised a coordinated response to the Department for Work and Pensions 2021 health and disability green paper, shaping future support for disabled people. We hope to tackle misunderstanding about disability and the support disabled people may need from the benefit system.

towards reform.

In recent months we’ve pressed parliamentarians, including former Prime Minister Boris Johnson MP, on their promise to fix social care once and for all. In response to their lack of action we launched the Social Care Isn’t Fixed campaign to send a message to those in power and highlight that social care remains inadequate for many.

It is clear the former administration failed to get a grip on the situation and the new Prime Minister must invest in social care. Rest assured, we are already engaging with the new cabinet to push for social care investment to be made a priority.

Care and Support Alliance

More than half a million people in England are on a waiting list for social care. The Government has no plan to cut the number of people waiting, no plan to increase the number of care workers and no plan to provide enough help for unpaid carers. This is why we are one of 70 members of the Care and Support Alliance campaigning alongside the millions of older people, disabled people and their carers who deserve decent care. We believe there is a strong case for change and are working with our members

Campaign to improve quality of life for those with neurological conditions

Neurological Alliance

We are a member of the Neurological Alliance in England and work closely with the Wales Neurological Alliance and the Northern Ireland Neurological Charities Alliance. We are working to transform the quality of life for people with neurological conditions, including MND, by improving treatment, care and support.

You may recall, we recently collected much needed evidence as part of the My Neuro Survey to help inform our campaigning and create real change throughout the UK. This evidence led to the Back the 1 in 6 campaign; 1 in 6 people in the UK live with a neurological condition, but the survey results revealed there simply isn’t the workforce or services in place to support them. This campaign calls for change and for all governments across the UK to back the 1 in 6 and set up a Neuro Taskforce to address these problems.

Additionally, as part of the Wales Neurological Alliance (WNA), we met with the Minister for Health and Social Services, Eluned Morgan MS, to discuss the findings of the My Neuro Survey in June. One of the key recommendations from the survey is that people living with neurological conditions should have “timely access to appropriate psychological and psychiatric assessment, treatment, and support”.

Richard Bailey, who is living with MND, joined us at the meeting to promote the benefits of a psychological service for those living with MND. He also highlighted the current situation where the service is no longer commissioned and the impact that this has had. From this meeting, the Minister for Health and Social Services committed to invest in the development of services for neurological conditions in Wales and asked for evidence of any decommissioned services.

If you would like to keep up to date with our campaigning work, please sign up to our Campaign Network by scanning the QR code.

Remembering Andy A tireless advocate for people with MND

Former MND Association trustee, Andy Cawdell, died in June, just days away from being re-elected to the Board and five years after his diagnosis of MND.

Andy (pictured right) was elected as a trustee for the MND Association in 2019 and was an invaluable member of the Board, bringing his skills as an accountant, knowledge of non-profit organisations and his own experiences of living with MND to the role. As well as joining the committee of our South London Branch and more recently becoming a member of the Southampton and Winchester Group, Andy volunteered as a Campaigns Contact and tirelessly advocated for people with MND. He also shared his own story, bravely documenting the difficulties he faced with housing accessibility for our Act to Adapt campaign. Andy was also a very active and supportive member of the MND Association forum and was a caring and knowledgeable contributor to many discussions about life with MND.

Richard Coleman, former Chair of the Board of Trustees at the MND Association, said: “Andy’s contribution to the Board was significant. His professional background meant he was particularly at home in our Finance and Audit Committee where his input was always valued. I know I can say on behalf of all the trustees that we admired and respected his determination to continue to be part of our various meetings, despite his obvious progression over the last few months in particular. Andy will be very missed.”

Our thoughts are with Andy’s wife Jeanie, his family and his friends.

Board welcomes new trustees

In May, we held our annual election to appoint new trustees to the Board. Trustees are volunteers, elected by members, who take overall responsibility and work together to govern the Association. This year, there were 16 candidates, the largest number ever, for five vacant positions.

The new trustees, who were officially welcomed at the Annual General Meeting in June, are: Dr Katherine Jackson, Ian Lev, Simon Croxford and Susan Fletcher-Watts. Former trustee Catherine Knights was also re-elected for a second term and appointed to Vice Chair.

We also said thank you and goodbye to co-opted trustee Devia Gurjar while welcoming marketing specialist Kirrie Todd as our newest co-opted trustee. Co-opted trustees bring particular skills or experience to the Board.

The AGM, held online once again, also gave Chair Richard

Coleman and Honorary Treasurer Jim Marshall the opportunity to provide an overview of the work and financial position of the Association over the past 12 months

Then Richard handed over the chair to incoming Chair Dr Usman Khan. Usman’s first job was to thank Richard for his many years of service and commitment, with thanks also going to former Vice Chair Jan Warren, and trustees Vicky Paeschel and Dr Heather Smith.

If you are interested in becoming a trustee, you can find more information online at www.mndassociation.org/trustees

Or contact our Governance Manager at governance@ mndassociation.org

No prior experience is needed and the Association provides full training and support.

Dr Katherine Jackson Simon Croxford

Susan Fletcher-Watts Kirrie ToddIan Lev

Thank you to all our corporate fundraisers

Since getting back to the office, our corporate partners have been in full swing fundraising for us. We’ve seen runs, treks, football matches and lots of activity from our longerterm charity of the year partnerships.

We are so grateful for their ongoing support.

Dell put on a series of superb golf days to benefit the Association

Toyota continued their support with various fundraising events including auctions, football matches and more

Hayes Davidson team members completed a 5K run around Hyde Park in gorgeous weather

Skills Alliance employees completed a Tough Mudder

A team from Alpha FX took on the tough challenge of the Richmond Half Marathon

Savills put on a fantastic event to celebrate the life of Alex Dawson and raise funds and awareness

Tennant UK employees embarked on ‘Walk for Webby’ – a virtual walk around the circumference of the earth in honour of their colleague who is living with MND

Berry Bros. & Rudd put together a special bottling of Berry’s Own Selection Macduff 2002 Whisky to raise funds for the Association

Knight Frank employees took on an impressive double marathon in 31 degree heat

Stonegate employees continued their fundraising efforts for us throughout the summer including a car wash, print sale and raffle at head office

I Will Always Be Me

takes top spot in Cannes

The revolutionary e-book which helps people with MND bank their voices has scooped a top prize at the prestigious Cannes Lions International Festival of Creativity.

I Will Always Be Me saw off competition from 298 entries to be crowned the winner of the Pharma Grand Prix award, which celebrates life-changing creativity. This award is the latest triumph for the e-book, which has received honours at a variety of health and marketing award ceremonies. The Association’s Director of Care Improvement, Nick Goldup, was also able to raise awareness of MND on a global stage during the Festival within the talk Finding the Heart in Tech Launched in February, the e-book allows people with MND to bank their voice in just half an hour. It is written from the perspective of someone living with MND explaining to their loved ones about the condition and their experience with the disease. The idea was born from the Next Generation Think Tank – founded by Rolls

Royce employee Stuart Moss, whose father died from MND. In collaboration with the MND Association, Stuart recruited some of the biggest companies in the technology world to join and work collaboratively to help find solutions for people living with MND. From this cohort, companies Dell Technologies and Intel designed and developed I Will Always Be Me with the help of people affected by MND, who were able to provide suggestions and trial the book while it was in development.

Banking your voice using I Will Always Be Me is free for anyone living with the MND in England, Wales and Northern Ireland thanks to funding from the MND Association.

To read I Will Always Be Me or to find out more, visit www.iwillalwaysbeme.com

Symposium 2022 preview:

Uniting the global research community

We’re looking forward to hosting the virtual 33rd International Symposium on ALS/MND from 6-9 December 2022, a meeting which brings together the MND research community from across the globe. Delegates will hear from 15 leaders in MND research who will take to the virtual stage in a series of plenary presentations.

This year’s speaker is Professor Fred Gage, President of the Salk Institute, who will give a talk titled The contribution of aging to neurodegenerative disease

Kicking off the Symposium is the Stephen Hawking Memorial Lecture supported by The Stephen Hawking Foundation. To stimulate fresh ideas and collaborations, this lecture invites inspiring speakers from outside the world of MND to share their valuable insights.

Our programme also includes Dr Ruben van Eijk, Assistant Professor at the University Medical Center Utrecht in the Netherlands. In his presentation, Dr van Eijk will discuss the challenges faced in MND clinical trials and how these may be overcome.

All the way from Australia, Associate

Chair’s message

Given the importance of the magazine to us within the MND community, I am always pleased to be asked to contribute to Thumb Print and, on this occasion, I hope you don’t mind me using it to talk about my fellow board members. Firstly, having taken the reins from Richard Coleman as Chair I want to thank him on behalf of the Association for the exemplary manner in which he guided the Board over the last four years.

A second early priority has been to offer a warm welcome to our new trustees. Their induction is already underway along with discussions about joining the sub-committees, ranging from finance to care they will be asked to sit on. Effective governance is never more important than during these times of change, challenge and opportunity. I also note with sadness the death of Andy Cawdell, a colleague and fellow trustee, who in the words of his wife Jeanie was her ‘MND warrior (who) lost his fight’. His intelligence, insight and good humour will be very much missed.

Finally, while she is with us until the end of the year, I wanted to start the process of recognising the transformational leadership of Sally Light our Chief Executive over the last decade. She will be missed, but her legacy is clear for all to see and as trustees and a Board we will do all we can to build successfully upon it.

Change is always going to be present in board working but let me take the opportunity to assure you that securing effective treatments and care for those living with this terrible disease will always be our guiding light.

Dr Usman Khan, Chair

Professor Shyuan Ngo from the University of Queensland will deliver a talk titled Investigating the role of hypermetabolism in ALS. Dr Ngo’s research aims to understand the cause and impact of increased energy expenditure in people living with MND.

Registration for the Symposium is now open and costs £60 per delegate. Please visit https://symposium. mndassociation.org to find out more.

Dr Fred Gage

Dr Ruben van Eijk Dr Shyuan Ngo

Carers Week update Recovery and Respite Plan for carers

To mark Carers Week in June, the MND Association joined forces with Carers UK and other charities to help raise awareness of the challenges faced by unpaid carers.

This year’s theme was all about making caring Visible, Valued and Supported.

Together, we launched a campaign calling on the Government to back a Recovery and Respite Plan for unpaid carers. It outlines additional support needed for carers across a range of areas, including breaks, respite and care services, infection control, identification of carers, financial help and support to help people juggle work alongside their caring responsibilities.

We urged our campaigners and supporters to write to their MPs to back the Plan. The MND Association also signed an open letter to Government lobbying for better support for unpaid carers.

We had the opportunity to attend various events alongside individuals with direct experience of caring for a person with MND. This was a chance to directly discuss with influential MPs the challenges that carers face and how the UK Government can better support those in caring roles.

Two virtual events were arranged, the first with Care Minister, Gillian Keegan MP, which was attended by Sue, one of our campaigns volunteers who cared for her husband, Jim diagnosed with MND in 2003. The second event was with the Shadow Care Minister, Karin Smyth MP attended by Subah who currently cares

for her husband who is living with MND. Both Sue and Subah explained the issues, including inadequate financial support offered to carers, a lack of respite, and feelings of invisibility.

We also attended an in-person Parliamentary drop-in event with carers Julie and Mary – pictured above with staff member Lana Ghafoo (centre). Julie is a retired primary school teacher who cared for her husband, Ian, after he was diagnosed with MND in September 2019. Mary works as a secondary school teacher, and cares for her brother who has MND.

Altogether, we spoke with 13 MPs and Peers with Julie and Mary sharing their stories and talking about the kind of support they felt carers should receive, and the importance of the Recovery and Respite Plan for unpaid carers.

Bake a difference in the fight against MND

Whether you’re a star baker or a fancy faker, put your skills to the test and host a cake sale, coffee morning or afternoon tea party to help raise vital funds for people living with MND.

It’s a great way to raise money, whether you host your event at work, home, school or in the local community.

Sign up and we’ll send you a free bakeit! pack with everything you need to organise and make your event look the part. Just add cake!

Ella and Madison, aged 13 and 10, recently raised an incredible £1,216 by organising their own bake sale. Ella and Madison’s bakeit! best bits

• Baking brownies with our mum

• Posting all the leaflets around the neighbourhood

• Selling the cakes and talking to the customers

• Counting all the money at the end

How will you bakeit!?

Cake and fizz

After dark add a glass of prosecco or two for a grown up bakeit!

Afternoon tea

Bring out the china for a vintage tea party

Cake sale

Works a treat any time of day

bakeit! breakfast

Perfect at school or work

Coffee morning

Get the community together for a mid-morning social

The sisters raised money in memory of their Grandad, who died earlier this year. Ella said, “I think he would have been very proud of what we have done and amazed at how much money we have raised”.

Over the last year, because of fundraisers like Ella and Madison, our bakeit! events have raised over £24,000. This could buy 10 text speech devices to give to people living with MND the ability to continue to communicate with their loved ones.

Visit www.mndassociation.org/bakeit and sign up for your free bakeit! pack today. Every penny you raise will help make a difference in the fight against MND.

(pictured L-R:) Julie, Lana and Mary

Ella and Madison

Meet the professionals: Paramedics

Sometimes people with MND will need support from emergency services if they are injured or become seriously ill. Ambulance paramedics are often the first professionals to arrive at the scene of an emergency.

The role of a paramedic is to support people in medical emergency situations. Most work within the Ambulance Service, providing immediate and emergency care in response to 999 calls made by the public.

On arriving at an emergency, paramedics work quickly to establish the person’s medical history and examine them to establish how best to help them. They are specially trained to make quick decisions in complex and high-pressure situations. Paramedics use medical equipment and medications to help keep a person stable while getting them to a hospital for ongoing treatment.

Not all paramedics are familiar with MND, and may not be aware that the person may have communication difficulties, or that they should not automatically be given oxygen or laid flat. If you, or the person you

care for, are experiencing an emergency situation, it will be useful for you to have some things to hand.

• By wearing an MND wrist band you will immediately make them aware that you have MND. Show them your MND Alert card too, as you can record the contact number for your specialist team here. A web link on the wristband and a QR code on the alert card help the paramedic or other emergency health professional find important information on how to give you the best care.

• Have a completed Understanding my needs document to hand. Give it to the person attending you. This will ensure that they understand your individual needs and preferences.

The MND Association provides the MND wristband, MND alert card and the Understanding my needs form free of charge. Email mndconnect@ mndassociation.org or call 0808 802 6262.

Information for professionals

Our guide, MND in acute, urgent and emergency care, has recently been revised. It provides guidance to emergency care professionals, including paramedics, on actions to take and things to consider when treating a person with MND.

The guide, along with other useful information for emergency staff, can be found at www.mndassociation. org/acute or hard copies can be ordered from MND Connect. Email mndconnect@mndassociation.org or call 0808 802 6262.

I became a paramedic because I like helping people, and the best part is being able to help people in their ultimate crisis.

Motor neurone disease (MND) in acute, urgent and emergency care

Stewart Lee, Advanced Paramedic with the North West Ambulance Service

A tribute to Professor Sir Colin Blakemore Eminent neuroscientist, patron and friend

Patron and former President of the MND Association, Professor Sir Colin Blakemore, has died aged 78, after being diagnosed with MND in 2021.

Sir Colin first supported our work significantly in 2007 when, as Chief Executive of the Medical Research Council (MRC), he suggested the MRC and the MND Association jointly fund Fellowships for young MND clinicians. This work continues today, through the Lady Edith Wolfson Fellowship programme, and over the years millions of pounds has been invested to attract, train and retain world leading MND researchers.

After leaving the MRC, Colin became our President in 2008, standing down to become a patron in 2019, following his move to Hong Kong. He excelled in his role as science communicator, and through his written blogs and appearances on national media he was able to explain the latest developments in MND research in simple terms, which

helped the MND community understand what the news meant for them. He introduced the Association to contacts at NICE, the National Institute for Health and Care Excellence, and was therefore instrumental in the development of the national NICE guideline for the management of MND which was published in 2016. And he regularly spoke at, and hosted, the annual MND Association Research Dinner, most recently in 2018, alongside our Royal Patron, HRH The Princess Royal.

In 2014, Colin received a knighthood in the Queen’s Birthday Honours list ‘for services to scientific research, policy and outreach’, and told the Association at the time that he hoped the honour would serve as an encouragement to all scientists who give some of their time to public service and public engagement. In addition to the work Colin did for our Association he was also involved with many other charities and organisations.

After his diagnosis last year, the Association’s relationship with Colin changed, and we were able to provide him with support: giving advice,

information and equipment to him and his family, and working with healthcare professionals through our network of Association-funded MND Care and Research Centres and Networks.

Dr Brian Dickie, Director of Research Development at the MND Association, worked with Colin for over 15 years. He said: “The world has lost one of its most eminent neuroscientists and the Motor Neurone Disease Association has lost a great friend. We are especially saddened that – having spent so many years of his life supporting people living with motor neurone disease – Colin should be subsequently diagnosed with MND himself. Despite his diagnosis Colin remained in touch with the Association and – not long before his death – he had a meeting with our speech and language team, showing great interest in their plans and offering his advice and support with their work. Typically of Colin, he gave his very precious time to help our work, all for the benefit of others.”

We offer our sincere condolences to Colin’s family, and his many friends and colleagues around the world.

Foundation’s £75,000 grant pledge funds wheelchair accessories and communication aids

The Wolfson Foundation has generously supported the Association over many decades, awarding over £1.4m since 1993, including a grant of £750,000 towards the Lady Edith Wolfson Non-Clinical Fellowships.

Most recently, the Wolfson Foundation has pledged a further grant of £75,000 to the Association to fund wheelchair accessories and communication aids for people living with MND.

Sally Light, our Chief Executive said: “A huge thank you to the Wolfson Foundation for this grant which will help to provide much needed support for people living with MND and improve their quality of life.”

Paul Ramsbottom, Chief Executive of the Wolfson Foundation said: “Our relationship with the Motor Neurone Disease Association goes back over three decades. We are delighted to support the remarkable work of the charity as it seeks to combat this most challenging of diseases. We hope that this support for specialist equipment will help to improve the lives of people living with MND.”

The Association offers equipment loan and financial support for people living with MND. This includes communication aids and apps to support people who face communication difficulties or a loss of voice.

Our Wheelchair Support Service can provide add-on accessories that the local wheelchair service is unable to fund, such as attendant controls, a powerpack or a seat riser.

Ian Lev, who is living with MND and received a grant from the Association to fund the elevating part of his wheelchair, said: “I can now join in with conversations when people are standing, as well as being able to rise myself up to hotel receptions, shopping counters and bars.

“Without the seat riser, I would either

have everyone looking down on me, or I’d miss out on parts of the conversation. Being able to engage in conversation at eye level makes me feel more positive and included, I don’t need to ask people to repeat what they’re saying because they’re over my head and above my ears.

“I’ve used the seat riser on holiday too, to order some drinks and food at the poolside bar. Those types of bars are quite high when you’re in a wheelchair. Without the rising seat, I’d be shouting up over the bar and the person behind the bar would have to lean over to see me and speak to me.

“I don’t go shopping that much, but when I do, the seat riser helps me see what’s on the shelves easier. When I’m sunbathing on our patio, the sun sets over a hedge and at the end of the day I can elevate the wheelchair to catch the last half an hour of sun!

“Thank you to those who have helped the MND Association fund the seat riser on my wheelchair. Thank you for helping me feel like a normal person.”

Find out more about support the Association can offer from our MND Connect Support team.

Without the seat riser, I would either have everyone looking down on me, or I’d miss out on parts of the conversation. Being able to engage in conversation at eye level makes me feel more positive and included, I don’t need to ask people to repeat what they’re saying because they’re over my head and above my ears.

Ian Lev

World record success for fellow Sandbagger

MND turned my whole world, and that of my family, upside down. The Sandbaggers gave me a space to feel normal, helped me navigate through some very dark times and finally find my old self again. Andrew Vaughton

A group of rugby-mad friends have set a new world record for the longest game of touch rugby – and raised £100,000 for charity.

The Sandbaggers Beach Touch Rugby Team have been playing the game regularly at Sandbanks beach in Dorset since 2008.

Last year, player and father-of-three Andrew Vaughton was diagnosed with MND.

He said: “MND turned my whole world, and that of my family, upside down. The Sandbaggers gave me space to feel normal, helped me navigate through some very dark times and finally find my old self again.”

The team decided to raise awareness

and money to support research into MND and care for people living with and affected by the disease.

Andrew said: “We came up with the idea of a world record attempt for the longest game of beach touch rugby. We

needed to play as two squads of 11 for more than 33 hours and 33 minutes.”

The record-breaking challenge took place in May in Branksome Dene Chine, near Poole.

“Although incredibly tough, the huge amount of support helped carry us over the line,” said Andrew.

The Sandbaggers played for a total of 34 hours and their successful world record attempt was confirmed by Guinness World Records in August. At the same time, the team raised an incredible £100,000 to be shared between the MND Association and My Name’5 Doddie Foundation.

UK clinical trials will accelerate potential new treatments

An explosion of knowledge over the last decade has turned MND into one of the fastest growing areas of neurological research and the MND Association is right at the heart of it. Clinical trials offer the opportunity for people with MND to participate in testing the latest drugs and therapies which could reap future benefits for others diagnosed with the disease. Here we report on the latest UK trials either currently recruiting or about to go live.

MND-SMART

The UK’s first platform trial and a long-term study that will run continuously until 2026.

Platform trials are designed to test more than one treatment at a time and are highly adaptive, which means researchers can change the drugs throughout the trial, allowing new ones to be added and those found to have no benefit quickly removed.

MND-SMART is currently testing two drugs called Memantine and Trazodone, which are already known to be safe and effective for use in other conditions. These are now being tested to see if they could be beneficial for people with MND.

Gene therapies

Several gene therapies are being tested as potential treatments for MND and are designed to treat people who have a fault in a specific gene.

FOCUS-C9

Phase 1/2, Now recruiting

A trial of a therapy called WVE-004 designed to target mutations in the C9orf72 gene, the most common genetic cause of MND.

FUS-ALS

Phase 3, Now recruiting

A trial of a therapy called ION363 (also known as Jacifusen) which will evaluate the safety and benefit of the therapy in people with MND who have mutations in the Fused in Sarcoma (FUS) gene.

ATLAS

Phase 3, Now recruiting

Phase 1

• Examines safety of the potential new treatment.

• Tested in a small number of healthy volunteers.

Phase 2 Phase 3

• Determines the best dose, how often it should be given and how best to give it (eg by mouth or injection).

• Tested in a small number of people with the disease.

• Assesses whether the treatment is beneficial for people with MND.

• Tested in a large number of people with the disease.

• Results can determine whether or not the treatment is approved.

ATLAS is testing a compound called Tofersen in people who have a mutation in the SOD1 gene but aren’t yet showing any symptoms of MND. It aims to determine the optimal timing to begin the treatment.

Repurposing existing drugs

Drug repurposing involves identifying new uses for drugs that are already approved to treat other conditions. They are already known to be safe, but still have to be tested to see whether they might be of benefit to those with MND.

LIGHTHOUSE 2

Phase 3, Recruiting soon

Trials an existing drug called Triumeq currently used to treat HIV. Research has suggested that it might be useful in treating some forms of MND.

PRELUDE

Phase 3, Recruiting soon

A trial where Lithium Carbonate is being tested in people with MND who have mutations in a gene called UNC13a. The drug is commonly used to treat mood disorders, but previous research has suggested that it may be beneficial for people with UNC13a MND.

Other drugs

Other trials are testing potential treatments that have been newly developed and aren’t already in use.

ADORE

Phase 3, Now recruiting

An oral form of Edaravone called FAB122 is being tested in people with the most common form of MND to see if it might be effective at slowing disease progression.

HIMALAYA

Phase 2, Now recruiting

A trial evaluating the safety and benefit of a drug called SAR443820 in those with MND.

PHOENIX

Phase 3, Now recruiting

A trial of the drug AMX0035 (also known as Albrioza), which is made up of two compounds, to see if it may be an effective treatment for MND.

Thanks to the dedication, sacrifice, and collaboration of the MND community in partnership with MND researchers, many promising potential therapies are now on the horizon and it is hoped that the current momentum of clinical trials can be maintained until MND becomes a treatable disease.

You can find out more about each of the trials mentioned in this article and the sites they are running at on the clinical trials pages of our website www.mndassociation.org/ treatment-trials

MND care standards

The National Institute for Health and Care Excellence recommends the types of care someone with MND should expect to receive, including access to a multidisciplinary care team (MDT). Use our pocket guide to open discussions about your care with health and social care professionals and providers.

Multidisciplinary teams (MDTs)

A multidisciplinary team (MDT) is where a group of health and social care professionals with different roles meet to plan co-ordinated care for you. The NICE guideline recommends you have access to this type of team.

My family is amazed at the care I have now. [My MND Care Co-ordinator] brings all the healthcare professionals together, so they can discuss everything and make sure nothing is missed. I can’t praise them enough.

Accessible information

Always ask if you need any kind of health and social care information at a relevant appointment, or if you require this information in a particular format, such as large print or easy-read.

Health and social care services in England must now provide information in a format you can access. For more details, search for Accessible information standard at: www.england.nhs.uk

If a person has dealings with the NHS in any way, they need to be making the people they see aware of the NICE guideline, as it is so important to all of us affected by MND.

Getting the care with

Managing the symptoms of MND care. Knowing how to access it independence and carry on doing

You can also find more www.mndassociation.org/careservices our MND Connect helpline or mndconnect@mndassociation.org

Palliative care

You can access palliative care as early as you wish. It’s an ongoing form of support designed with a ‘whole person approach’. Services range from symptom management to practical, spiritual and psychological support and they can often extend support to your family too.

I’ve been attending St Richard’s Hospice for several years! Clearly it has been supporting me too well! I have got into painting while there. They do aromatherapy, creative therapy, counselling, chaplaincy, you can see a doctor, physio, occupational therapist etc. It is run by nurses and volunteers. I have also been an inpatient, including for symptom control, but keep bouncing back and they’re all just fantastic.

Home care

There are many service providers who can arrange help at home with everyday tasks such as washing, dressing and preparing meals. They can also run small errands such as collecting prescriptions. Often called a care worker, the role is varied and they can either visit regularly or live in with you. They can assist with as much or as little as you wish. Sometimes, this extra help in your own home can prolong independence. Contact your local authority to find out what’s available in your area.

the right with MND

MND can involve different types of it could help you maintain your doing what you want to do for longer.

details on our website, www.mndassociation.org/careservices or by contacting helpline on 0808 802 6262 mndconnect@mndassociation.org

Emergency care

Planning ahead can help everyone involved in your care know what’s needed if usual routines are disrupted, or if you need emergency healthcare for any reason. Find the following tools in forms and resources to help communicate your needs at: www.mndassociation.org/careinfo to let people know your needs and preferences:

• Understanding my needs

• Motor neurone disease checklist

• Advance decision to refuse treatment (ADRT) form

• MND alert card and wristband

Adult social care services

Getting a needs assessment for yourself or an unpaid carer provides access to information, equipment and support from your local authority. Search for Find your local council at www.gov.uk to ask for an assessment, or if you live in Northern Ireland search at www.nidirect.gov.uk

See our Health and social care hub for more: www.mndassociation.org/careservices

Coming soon!

Our latest booklet Types of care will explore the different types of care available, how they can help you and your carer and how to access them. It also includes guidance on finding out what you should expect from your care, how to help inform the professionals supporting you, and the benefits of planning future or emergency care.

To request your copy, call MND Connect on 0808 802 6262 or mndconnect@mndassociation.org

MND Action in Northern Ireland

Earlier this year, 22 newly-elected Members of the Northern Ireland Legislative Assembly (MLAs) signed our Northern Ireland MND Election Pledge which asked candidates to support:

• The development of a Northern Ireland Regional Care Network

• Delivery of safe and accessible homes for people with MND in Northern Ireland

• Unpaid family carers of people with MND in Northern Ireland

Since then, we have been focused on engaging directly with the MLAs to discuss how members can act on their promise to

ensure MND is a priority for the next administration.

As part of Global MND Awareness Day in Northern Ireland we arranged a successful drop-in event in Stormont. 20 MLAs and the Minister for Health attended which gave us an opportunity to discuss some of the key issues affecting people living with MND in Northern Ireland, such as problems with equal access to services and home adaptations.

The brilliant Branch Committee, including Raymond Hill who is living with MND, supported us at the event and we were thrilled with how it went. We had lots of support from MLAs and a few key contacts to follow up, with personal experience of MND.

Update: Scrap 6 Months

Following the success of our Scrap 6 Months campaign, the Government confirmed the introduction of longawaited changes to the Special Rules for Terminal Illness (SRTI) process in England and Wales. As a result, access to the fasttrack process for claimants with a terminal illness is now set to expand across all applicable benefits via the Social Security (Special Rules for End of Life) Bill.

The MND Association, alongside our partners at Marie Curie, have campaigned since 2018 for the Government to reform the SRTI process to better suit the needs of people with more complex and unpredictable terminal conditions such as MND. In 2021, the Department of Work and Pensions (DWP) confirmed that it

would reform the criteria to include people who are expected to have 12 months of life remaining, rather than only six months. Earlier this year, the DWP implemented this change via secondary legislation for certain benefits in England and Wales. This meant that individuals living with a terminal illness who are expected to have one year of life remaining are now fast-tracked for both Universal Credit and Employment and Support Allowance. In Northern Ireland, the changes have been implemented across all applicable benefits.

However, the introduction of the Social Security (Special Rules for End of Life) Bill means fast-track access will also expand to all three remaining applicable benefits across England and Wales: Personal

Independence Payment, Disability Living Allowance, and Attendance Allowance.

We are pleased to see that the Bill has rapidly progressed through all stages of the House of Lords and will continue its journey through the House of Commons once Parliament returns from Summer Recess in September. Once passed, the process will now be renamed to the ‘Special Rules for End of Life process’.

Baroness Steadman-Scott stressed the importance of the Bill’s swift progression through Parliament during its final reading in the House of Lords, emphasising that it will provide ‘thousands more people with vital financial support’ so that they can ‘focus more on sharing the valuable time that they have left’ with their loved ones.

(Pictured L-R) Louise Hughes (Area Support Co-ordinator), Robin Swann, MLA (Health Minister), Raymond Hill (NI Branch Committee), Clare-Anne Magee (hoRCP) and Siobhan Rooney (NI Branch Committee and MND Association Trustee)

Dad’s Tribute Fund means his spirit continues

An MND Association Tribute Fund gives friends and family the chance to remember a loved one by sharing memories, photos and messages online, as well as the option to make a donation.

Here, Avnish shares what the Tribute Fund set up in memory of his dad Harish means to him and his family.

“Dad really cared about helping people and was very charitable. As a Chartered Accountant, he did the accounts for many charities free of charge and, even towards the end of his life, he continued to serve the community.

“As Treasurer of the Malawi Asian Organisation, he was instrumental in building 150 houses for victims of flooding in Malawi.

“Dad was very active. He loved to walk, swim and play badminton. He practised yoga every morning and ran free yoga classes. He was a passionate cricket fan and never missed an India or England match.

“What mattered most to Dad was his family. Everyone valued his advice and guidance and he was happiest when with his grandchildren.

“Our family has supported the Association since Dad’s brother, Anil died of MND in 2000. Following Dad’s diagnosis in 2017, he wrote a bucket list and saw the Northern Lights and completed pilgrimages with Mum to the Himalayas other sacred sites in India. To reach such remote areas is not easy for anyone, but to do so while living with MND shows how determined he was.

“Setting up a Tribute Fund is our way of honouring Dad’s spirit. He made the amazing decision to donate his brain to MND research. We hope the money raised in his memory will provide vital funds to facilitate research and help other people living with MND.”

To set up a Tribute Fund and find out more, please visit www.mndassociation. org/tributefunds

CARE INFORMATION UPDATE

Revised information sheets

The following information sheets have been updated:

1A – About the NICE guideline on MND

8A – Support for breathing problems

8B – Ventilation for MND

8D – Air travel and ventilation for MND

See the full range of our information sheets at www.mndassociation.org/careinfo

Revised information for professionals

We also offer resources to health and social care professionals, to help them provide tailored support. The following items have been updated:

· Information sheet P1: Head supports

· MND: a guide for GPs and primary care teams booklet

· MND in acute and emergency care booklet

See our all of our resources including those for professionals and researchers at: www.mndassociation.org/publications or order printed copies from our MND Connect helpline: 0808 802 6262, mndconnect@mndassociation.org

Our information development is accredited through the PIF Tick scheme. This means our resources are evidenced, user tested and reviewed by experts.

Trusted Information Creator

Would you like to help with our information development?

We work alongside people with MND or Kennedy’s disease, and their carers, to develop and improve our information. We have lots of work ongoing in 2022. If you would like to get involved, you will have opportunities to feed into a range of different content and formats.

You can pick and choose which tasks you want to work on and make a difference from the comfort of your own home.

To find out more, contact: infofeedback@mndassociation.org

Harish with his wife and grandchildren

A musical medley hits the right note

Supporters raised thousands of pounds with a series of musical fundraisers held over the summer.

Musician Guy Booth held a 24-hour music-a-thon The Longest Music Jam in Town, following his wife Kelly’s diagnosis with MND in February. Guy said: “ We have begun to receive several areas of support from the Association, both for Kelly and our two daughters. Kelly and I have had a local welfare grant for us to enjoy some time away and we’re applying for further grants to help with driving lessons for our eldest, Annabel and horse-riding lessons for our youngest, Imogen. We’ve also had the memory boxes which Kelly and the girls have begun to work through together.

“As a music therapist and Director of Music in the Army Reserves, having served for over 30 years in the Army as a musician before that, this seemed the obvious way to raise money and awareness of the disease.”

Guy was delighted the event raised over £17,500 for both the MND Association and Severn Hospice.

Cheltenham Town Hall was alive with the sound of music, as friends Caroline Edwards and Julia Owen hosted Supper and Song. The evening featured an array of entertainment including a West End performer, a top Edith Piaf tribute artist and performances from Caroline’s own choir, compered by BBC Points West reporter, Steve Knibbs.

The pair decided a big concert was needed to celebrate the lives of friends who had died of MND while raising money to help others.

Caroline said: “The concert itself was just incredible, with lots of people joining forces for good. All the performers were amazing, and it was so special to host the dinner and evening in the beautiful Town Hall in Cheltenham. The choir community has been phenomenal and got behind our

the Barn, to celebrate the life of Russell Scott, who died last year. The crew turned a farm barn in Cheddar, Somerset into a festival stage and created a night to remember.

His wife, Alison Scott said: “Love Lights up the Barn was so apt a name in tribute to Russ and as a focus for our fundraising. Russ was loved by many people, family, friends, colleagues and acquaintances – he was just a lovely, lovely man with a beautiful soul. We were so thrilled with how the evening went - sound, lighting, entertainment, catering, but mostly the love and goodwill of our dear family and friends was palpable. We were literally carried along on a wave of love… and everybody felt it”.

The evening raised over £9,000 for the MND Association and Weston Hospice Care. Keen singer Jordan Durrall is using his musical talent to raise money in memory of his mom, Annemarie. She died just six months after being diagnosed with MND, aged 54.

fundraising efforts. Alongside the concert we have organised car boot sales, karaoke nights, Zumba, wine and cheese nights and one choir member even completed a wing-walk. With all of that, a silent auction and ticket sales we have raised over £40,000.”

And it isn’t stopping there – Caroline and her husband are running the London Marathon in October in the hope of taking the total raised to £50,000.

There was a festival vibe for supporters in Somerset, who attended Love Lights Up

Jordan, who works as a manager at Asda, recorded his version of Callum Scott’s You are the Reason and has raised over £4,000. He said: “My mom loved hearing me sing, whether it was at weddings or on the karaoke, so I promised her I’d do something to raise awareness. My mom was a woman who loved life, and who lived it to the fullest. She took every opportunity she could, ran with the wind, and made sure that every second of her life, and the lives of those in her company, was the best it could be. Mom’s one wish was that other people did not have to suffer the way she did.”

If you fancy hosting your own musical fundraiser, sign up to receive a fundraising pack today by visiting www.mndassociation.org/ fundraiseyourway

Guy Booth and his family

Love Lights Up The Barn singers

Jordan Durrall and his mother

Caroline Edwards concert

OBITUARY

Collaboration community

When we come together, we can achieve great things. And that’s exactly what our new online resource, the Collaboration Community offers – the chance to come together as a diverse collective of inspirational individuals to collaborate on exciting opportunities.

The Collaboration Community launched in August and already there are projects available to get involved in.

There are opportunities related to inclusivity at the Association, an invitation to help shape our support grant process, and an exclusive preview of our recent report focusing on carers of people with MND.

There’s more to come. And we’re looking forward to hearing your thoughts, suggestions, and lived experiences in this creative space. There’ll be various tools and resources available with lots of support and guidance to help you make the most of them.

As projects progress, the Association will

Volunteer portal

Thanks to insightful and honest feedback from our focus groups, this month we’re unveiling a new-look volunteer portal. Key features, in response to suggestions from our volunteers, include increased visibility of records for

keep you updated through the Collaboration Community so you can see the impact you’re having on the MND community.

If you would like to find out more go to www.mndassociation.org/collaboration or contact the volunteering team at volunteering@mndassociation.org or telephone 0345 604 4150.

Len Johnrose

This is Len Johnrose, professional footballer, teacher and family man who lived in the spotlight with MND until he died in August.

people supporting someone living with MND, simplified access to the details of people connected to your group or branch, and a new notification centre that collates updates into one easy-to-access area of the portal.

Emergency grants extended

Our one-off emergency grant, introduced during the Covid-19 pandemic, has been extended until the end of the year to help people living with MND who may be struggling with additional living costs.

The grant, up to the value of £250, can be used to help to pay for items such as food shopping or household bills.

To date 449 people living with MND have received emergency grants totalling around £110,000.

If you would like to apply for an emergency grant visit www.mndassociation.org/grants

Len spent his playing career with clubs including Burnley, Bury and Hartlepool United. Following the public announcement of his diagnosis with MND in 2018, he dedicated time to raising awareness and vital funds. He visited football clubs and universities to speak about the realities of living with the disease. Len also lobbied politicians for better services for people with MND. He gave numerous media interviews and was a prolific tweeter, documenting his experiences with humour and honesty.

Chris James, Director of External Affairs at the MND Association, said: “Len helped us in almost every area of our work, responding positively to every request and invitation, and giving his time to help both nationally and locally.”

The MND Association will be here to support Len’s wife Nadine and all the family going forward.

People living with MND can use the emergency grant to pay for things like food shopping or bills

493 in7 golf challenge

Inspired by our patron Kevin Sinfield OBE and his 7 in 7 challenges, professional golfer Martin Heggie took on his own challenge – with a golfing twist.

Martin set out to play 493 holes of golf in seven days – in recognition of the number of games Rob Burrow MBE played as scrum half for Leeds Rhinos, and Rob’s iconic shirt number. That meant 27 rounds of golf plus an extra seven holes in just one week.

Martin, the PGA Professional at Moortown Golf Club, said: “The motivation came from just how tragic Rob’s situation is, how he is with his kids and also from Kevin Sinfield and what lengths a pal will go to for another pal.

“I’ve been to Rhinos’ matches and Challenge Cup finals. It’s very humbling when you see moments like when Kevin

ran into Headingley stadium to be met by Rob.”

Martin completed his challenge by playing all of the 28 courses in the Leeds and District Union of Golf Clubs – who donated generously, supported by a team of family and friends who took on caddying and refreshment duties.

The challenge saw Martin covering more than 20 miles each day, starting at 4.30am, and finishing on the final day at his own golf club where he was joined by golfing legend Mark James for the last seven holes.

He said: “I wasn’t 100% sure I could do the challenge, but it was such an enjoyable week and thanks to everyone who supported. It was all made worthwhile seeing the target I had set of £10,000 being smashed.”

The motivation came from just how tragic Rob’s situation is, how he is with his kids and also by Kevin Sinfield and what lengths a pal will go to for another pal. Martin Heggie

Martin Heggie with his support team at Headingley Golf Club on day six of his challenge

Act to Adapt connects with councillors at LGA conference

Members of the MND Association’s Campaigns team were at the first Local Government Association (LGA) Conference for more than two years, to rally support for our Act to Adapt campaign.

And they were greeted by plenty of enthusiasm from the councillors who were attending from across the country.

Senior Campaigns Adviser Niall Murphy said: “Act to Adapt depends on changes being made at local policy level by councillors and council officers so it was really exciting to be in the same room as many of the decision makers, explaining why change is so crucial.”

Act to Adapt asks councils to:

• Introduce a fast-track process for people with MND

• Remove the financial assessments for Disabled Facilities Grants (DFGs) under £5,000 for those living with the disease.

During the three-day event, the team spoke to around 200 councillors, raising awareness of MND. Niall said: “These conversations were so important as although many of the councillors’ constituents will have MND, many of the councillors themselves won’t have a personal connection with the disease. We were able to talk about the new government guidance,

support and why this campaign is so important.”

Around 50 of the councillors, as well as the Shadow Secretary for Levelling Up, Housing and Communities, Lisa Nandy MP agreed to be contacted about the ways they can help address the inadequacies of adaptation services so those living with MND can live safely, independently and with dignity in their own homes.

Recently Sefton became the latest council to make changes in response to the Act to Adapt campaign. Cabinet approved a change to their means testing policy and as a result, Sefton no longer carries out financial assements on people where their required home adaptation works is likely to be under £10,000. Additionally, anyone at end of life or a with a life-limiting illness, such as MND is not financially assessed for DFG work up to £30,000. People with MND will also be prioritised for assessment by the Occupational Therapy Team and equipment and adaptation work is automatically fast-tracked and processed as a priority.

This is a positive outcome for the people of Sefton who now have an improved provision of safe and accessible homes for people living with life limiting conditions including MND.

We will continue to work with other local authorities to ensure other people with MND have access to timely and affordable home adaptations.

Cllr Judy ClokeCllr James Lancaster

Cllr Stewart Golton

Cllr Karen Lucioni Cllr Simon Tagg

Cllr Richard Kemp and Cllr Kristofer BrownCllr Tudor Evans

Cllr Alison HoltCllr Sebastian Bowen

Senior Campaigns Advisers (SCAs) with Lisa Nandy MP (centre)

Tofersen treatment could prove beneficial

These latest results provide increasing confidence that Tofersen is having a beneficial effect in people living with SOD1 MND and will hopefully provide proof of concept that gene therapies may be helpful for other forms of MND.

Dr Brian Dickie, Director of Research Development

In our summer edition new results from the open label extension of the VALOR trial of Tofersen were presented. Tofersen is a potential treatment targeting a specific genetic mutation within a specific gene thought to cause MND in around 2% of people living with MND. This results in the formation of abnormal SOD1 protein, toxic to motor neurones and can lead to their death. Tofersen has been designed to stop the production of this abnormal protein. While the results of the original VALOR six-month clinical trial in 2021, suggested Tofersen was not beneficial for people living with MND, there were some hints that Tofersen was having some effect

which led to participants continuing to be closely monitored. This phase of the trial is known as the ‘open label extension’, which means that everyone in the trial now gets access to the drug, including those in the original placebo group.

Results presented from the first 52 weeks of the trial, including the open label extension, show that participants who received Tofersen earlier and longer had:

Lowered levels of SOD1 protein showing that the treatment is engaging with the biology it is meant to.

Lowered levels of neurofilament light chain – a marker of nerve damageindicating a reduction in nerve damage and disease progression.

Lived longer than participants who started Tofersen six months later, in the open label extension.

Trial data suggests that the earlier a potential therapy is given the more beneficial a treatment may be. This is the basis of another trial of Tofersen,

called ATLAS. This Phase 3 trial will try to determine the best time to begin treatment with Tofersen for those who have SOD1 mutations but who have not yet started to see symptoms of MND. ATLAS has just opened for recruitment in the UK (see page 19 for more information)

Dr Brian Dickie, Director of Research said: “These latest results provide increasing confidence that Tofersen is having a beneficial effect in people living with SOD1 MND and will hopefully provide proof of concept that gene therapies may be helpful for other forms of MND. We are closely following the recent news that Tofersen will be reviewed by the FDA in the US and are in contact with Biogen (the company that developed Tofersen) to discuss what the regulatory approval process will look like in the UK.”

To find out more about Tofersen and the latest ATLAS trial in Sheffield, head to our website www.mndassociation.org/tofersen

Dr Andrew Tossolini, Researcher at University College London

Not all heroes wear capes – some use walking frames!

Second World War veteran Harold Jones, who turned 99 in July, started walking laps of his garden at the beginning of the first pandemic lockdown to keep active.

Two years on, the former Lance Corporal has raised almost £21,000 for the MND Association – and he’s still completing 40 laps of his garden every day!

After a friend died of MND, Harold, inspired by Capt. Sir Tom Moore, decided to use his daily walk to raise funds for families affected by the disease.

He completes his daily laps with the aid of his late wife’s mobility tricycle walking frame. And he’s not one to look for an excuse to bow out – he’s walked every day, in every kind of weather, notching up a total of 27,000 laps, equivalent to 430 miles.

Family, friends and local businesses have supported Harold’s efforts with an anonymous donor doubling his fundraising when he reached £10,000.

But he’s not finished yet. He’s now upped his target to £25,000, with his resolve strengthened by the death of two more friends from MND.

Harold said: “As long as my health and physical ability continues, I intend to continue with my laps. If those diagnosed with MND know that I am walking every day and using that time to reflect and pray for them all then they will know that each and every day someone is thinking about them and is trying to make a difference.”

His birthday was marked by a visit from members of the Royal Army Pay Corps (pictured left) who presented Harold with a birthday cake and a plaque commemorating his fundraising achievements.

Harold Jones with a plaque from the Royal Army Pay Corps commemorating his fundraising achievements

If those diagnosed with MND know that I am walking every day and using that time to reflect and pray for them all then they will know that each and every day someone is thinking about them and is trying to make a difference.

Award-winning marmalade created by former trustee

A limited-edition marmalade which won the Dalemain 2022 Homemade Double Gold Award at the World’s Original Marmalade Awards in June will raise money for the MND Association, thanks to the support of its creator, and former trustee, Mike Ranson.

The accolade for Newcastle-based Mike means that, aside from being a monumental win for his Seville Orange Marmalade with Cider and Calvados, 50p from each jar sold though Dalemain will be donated to the MND Association as Mike’s chosen charity.

Mike’s marmalade scooped the top prize after being selected from fifteen homemade category winners. The judges, from upmarket department store Fortnum & Mason, said that what made this marmalade really interesting was the combination of two kinds of alcohol which are very distinctive and work well with the overall citrus flavour.

A former chartered accountant and

magistrate, Mike became a trustee of the Association in 2011 and took on the role of Honorary Treasurer in 2015 until 2018 when he stepped down from the Board. Mike’s father lived with MND and died in 1981.

Mike Ranson said: “I am thrilled to have been awarded Best in Show. I first learnt the secrets of marmalade making at an early age, from my father, who sadly died from motor neurone disease. I’m particularly pleased, therefore, that the sale of my marmalade will raise funds for the MND Association, a charity so close to my heart, and in his memory.”

Mike’s marmalade will be commercially produced as a ‘limited edition’ for a year and is available from Fortnum & Mason’s prestigious Piccadilly store as well as online. Please note that only jars bought directly from Dalemain will benefit the Association. To make a purchase go to www.dalemain.com/product/2022-best-inshow-winner-mike-ransons-seville-orangeand-cider-marmalade

All the extremes

Epic cycling challenge around Britain

In early summer, Martin Waters from Bury in Lancashire completed a 2,000 mile cycling challenge around mainland Britain in 20 days to raise awareness and over £8,000 for two charities close to his heart, after family members sadly died from motor neurone disease and dementia.

Speaking before his challenge, Martin said: “In September 2018, my mother-inlaw died. She was 78. She had for several years been fighting motor neurone disease during which time the disease started to strip away her physical capabilities.

“In January 2019, my dad died. He was 76. He died from dementia after less than three years of rapid decline as the disease stripped away everything that made him the great person he was.

“Given how these diseases impacted my family, I’m hoping to give a little something back by raising funds for the MND Association and Dementia UK.”

Setting off from the most northerly

point at Dunnet Head, Scotland on 29 May, Martin’s gruelling route took in all the extremities of Britain’s varied terrain, as far south-west as Lands’ End and as far east as Great Yarmouth, before travelling back up to north-west Scotland to finish at Ardnamurchan Lighthouse. His punishing schedule meant cycling 100 miles every day to meet his planned target of 2,000 miles within 20 days, which he achieved on 17 June.

Martin said: “My father and mother-inlaw had great, fulfilling lives and despite both being brought to an end too early, neither were defined by these diseases.”

Dominic McDonough, Regional Fundraiser for the Association, said: “I would like to say a huge thank you to Martin for taking on this amazing challenge. It was such an incredibly hard journey, but every penny and every bit of awareness raised helps us to help others. He truly is an inspiration!”

The World’s Original Marmalade Awards

Mike Ranson with his double gold award

Martin Waters

Accessible fashion-wear in honour of Mum

When Bernadette Heaps was diagnosed with MND in October 2020, her daughters Sarah and Hayley found it difficult to find clothing that was accessible, fashionable and didn’t cost the earth.

Sarah said: “Mum was born to be a mother, she absolutely loved it. She was a mum to me, Hayley and our older brother Ryan. She also adopted two more sons, Jason and Lucas, in 2014. She was the most selfless person I’ve ever met. She passed away seven months after being diagnosed with MND, so it was a very fast decline.

“After her diagnosis, I felt lost, helpless and out of control. I moved back to Preston to help Dad. There were so many visitors from the NHS and social care and we had so much equipment, yet nobody ever mentioned clothing or how difficult it would become to dress Mum.

“To begin with, Mum was in

a wheelchair but had total use of her upper body, so tops weren’t an issue. I bought her a rail that she could reach from her chair, and pants with elasticated waistbands and loose ankles for her swollen legs. Then we would shop for t-shirts with a wide neck and loose armholes. As her MND progressed, she lost the use of her arms and shoulders, so we had to start thinking of more solutions. Hayley and I were fashion buyers so we had a good idea of what would help. We started searching the internet for adapted clothing, but it catered to what we felt was an older audience and it was very expensive.

“At Christmas I asked her what she wanted to wear as she’d just been wearing joggers and t-shirts for a while and wanted to wear something a bit special. She picked out a leopard print blouse that she’d had for years and always made her feel nice,

but she couldn’t get it on. I remember seeing the disappointment on her face and it was just another reminder of MND.

“As we started coming up with our own solutions for Mum’s needs, she told us that we should set up our own adapted fashion line. Mum tried on all the items we made, and she came up with the name, Fashion/ Able. There were times when her condition would change in a matter of days, so thinking of ideas for Fashion/Able was a nice distraction for us all.

“In Mum’s honour, we’ve focused quite a lot on things that would have helped her, like blouses with Velcro fastenings at the back (see image left) and satin pyjamas which we found helped her move more easily in bed.

“At the end of her life, Mum told us to channel our anger and hurt into something productive. So, now, when the grief is really getting to me, I get busy with Fashion/Able and think of the ways this could help other families like ours.”

You can see more of Sarah and Hayley’s collection at: www.fashion-able.co.uk

There were so many visitors from the NHS and social care and we had so much equipment, yet nobody ever mentioned clothing or how difficult it would become to dress Mum.

Bernadette with her daughters Sarah and Hayley

Youngs brothers’ testimonial year for causes close to their hearts

The MND Association is delighted to have been chosen as one of two charities to benefit from the testimonial year of rugby union legends Tom and Ben Youngs. Testimonials are awarded for long-service as well as to those who have made an outstanding contribution to the club during their careers. The brothers have played at Leicester Tigers together as well as England and the British and Irish Lions.

In September Ben and Tom held an exclusive Testimonial Ball at The

Grosvenor House Hotel, London. As one of the hottest tickets in town, the evening sold out quickly and was attended by an array of well-known ex and current rugby stars. Guests enjoyed a three-course meal, live music as well as other special entertainment and fundraising activities. The fundraising ball beneficiaries were the MND Association and Blood Cancer UK, two causes close to Ben and Tom’s hearts. Their cousin, Jake, died in 2021 three years after being diagnosed with motor

News from our networks

Hidden disabilities and conditions forum

The forum meets monthly and is open to all staff and volunteers, it will in due course be extended to people with and affected by MND and Association members. Membership is steadily growing and at this stage in its development the forum concentrates on providing a mutually supportive environment for people who are not neuro typical or who are living with mental and emotional issues. For more information please contact john.gillies@mndassociation.org

neurone disease.

Ben said: “My brother and I are delighted to be using our testimonial year as an opportunity to raise funds for two charities which mean a lot to our family. We know how important the MND Association’s work is in funding vital research into treatments and a cure and the difference the charity makes daily to people living with MND through care and support services. We want to do all we can to help.”

LGBTQIA+ support group

Tuesday 1 November at 5.30pm

We are piloting a virtual support group for people with MND and their loved ones who identify as part of the LGBTQIA+ community. The group aims to provide a safe and inclusive space to meet others who share a similar experience. For joining details please contact lgbtqia@mndassociation.org

Ben and Tom Youngs

We know how important the MND Association’s work is in funding vital research into treatments and a cure and the difference the charity makes daily to people living with MND through care and support services.

images

Support Grant review

The MND Association’s grants programme is being reviewed to ensure it is providing the very best support to people with and affected by MND.

Our grants programme is integral to the support the Association provides – offering financial help towards buying specific equipment, continuing a much-loved hobby or funding a carer’s respite break, for instance. To fulfil our Promises to you, it’s important we make sure the programme is still fit for purpose.

Since July, members, branch and group volunteers, people living with and affected by MND, and staff have been reviewing the current service together. We have carried out surveys and held workshops to find out what works well and what could be improved. For example, we asked if the grant amounts offered are enough in the current financial climate and whether our programme offers the right level of support for the many and complex needs of people living with MND.

The feedback is now being analysed with recommendations on improvements to the programme set to be presented to the MND Association’s Care Committee by the end of the year. A further update will appear in the winter edition of Thumb Print

You can find more information and updates about the Support Grant Evaluation here: www.mndassociation.org/ supportgrantreview

More information about our Promises is here www.mndassociation.org/promises

David

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

Paul Smith, who was diagnosed with MND in October 2019, has received grants towards a stair lift, a ramp and tray for his electric wheelchair

MND Action in Wales

End of Life Care drop-in event at the Senedd

We’d like to thank everyone who supported our petition, with Marie Curie Cymru, calling on the Welsh Government to implement a new End of Life Care (EOLC) programme, after the previous plan ended in March.

Poorly resourced infrastructure, limited programme personnel, and the impacts of the pandemic, have all hindered the ability to deliver an effective and timely EOLC programme. Without a new plan in place, people living with MND risk missing out on vital palliative and end of life care.

Over 2,000 supporters signed the petition, calling for:

• A clear, bold and detailed implementation/action plan

• A commitment to sustainable and ring-fenced funding

• Sufficient capacity/end of life care personnel within government and supporting NHS organisations eg The NHS Collaborative.

To highlight the petition, we hosted a drop-in event at the Senedd with Marie Curie Cymru in June. 25 cross-party Members of the Senedd (MS) attended, demonstrating their commitment to raising the importance of end of life care in Wales. Following the event, a number of

supportive MSs used their written and oral questions to ask the Minister about the progress of the EOLC programme.

Accessible housing in Wales

We recently published a report reviewing non-means testing for small and medium housing adaptations for people living with MND in Wales. In it, we recommended that local authorities should implement a transparent, non-means tested, and fast-tracked process for those living with MND when providing home adaptations in Wales.

41 Members of the Senedd from across the political spectrum voted in support of this, and the Welsh Government stated that a non-means tested system should be in place in almost, if not all, local authorities by April 2022.

In May, all 22 local authorities were contacted by our campaign volunteers with a Freedom of Information (FOI) request to find out which local authorities had implemented this welcomed guidance. With this information, we created the Non-means testing for small and medium housing adaptations for people with motor neurone disease in Wales report which has now been circulated to Members of the Senedd, the Care Network and the MND community. We are also in the early stages of carrying out the same process for fast-tracking.

We hope these reports will act as a tool to hold local authorities to account when it comes to accessible housing for people living with MND in Wales.

Global MND Awareness Day

Representatives of the MND Association met with Peter Fox MS, our champion of MND, on the steps of the Senedd to raise awareness of MND in Wales. We were joined by people living with and affected by the disease in Wales as well as 20 other supportive MSs from across all parties.

The purpose of the event was to call for investment into MND research in Wales, with a particular interest in recruiting a lead neurologist with a care and research function. Additionally, we stressed the importance of investing in improvements to care and services, as well as safe and accessible homes to allow those with MND to live safely, independently and with dignity.

Alongside this successful event, we were able to secure Peter Fox MS to make a 90 Second Statement in the Senedd in addition to submitting a Statement of Opinion which was subscribed by 17 MSs. Noise was also generated in the Senedd with newly supportive MSs, such as Natasha Ashgar, who used her oral question to ask the Finance and Local Housing Minister about accessible housing.

Joined by Motor On (left to right), Richard Bailey, Linda and Martin Skelly, Alison and Mike Lewis, Sian, Millie, and Richard from the MND Association

Making the most of her time

Emily’s summit challenge

Sitting in her wheelchair on the summit of Pendle Hill in Lancashire was a special moment for Emily Janes.

With the help of friends, family and Pendle Mountain Rescue Team volunteers, Emily was back on the top of the hill she’d climbed in 2019, just a few months before being given her MND diagnosis.

Emily, who’s 61, said: “I remember walking up there before I was ill. I never envisaged being up there again. It was a small miracle for me.” This time, Emily used an all terrain vehicle with caterpillar tracks for the main part of the climb, before being carried in her wheelchair for

the final few metres. She then had time to enjoy the view from the top surrounded by a host of friends and family.

Emily, a retired teacher and dyslexia assessor, said: “I can no longer walk but I’m still as adventurous as ever, we just need to adapt things.”

And the adventure didn’t stop there. There was an evening celebratory party to attend and then, the next morning, once again supported by the mountain rescue team, Emily indulged in some wild swimming in the River Ribble.

She said: “I know climbing big hills and wild swimming isn’t everyone’s cup of tea, but it was the kind of thing I loved doing

before becoming ill with MND. I believe that we have more opportunities than we think we have. But we tend to shut down things because of fear. So, I would encourage you, if you have a terminal illness like mine, or even if you haven’t, to take a few risks and make the most of the time you have.”

Completing her challenge, saw Emily raise over £10,000 to support the work of the MND Association.

You can read more about Emily and her adventures on her blog MNDiva at https://mndivacouk.wpcomstaging. com

I believe that we have more opportunities than we think we have. But we tend to shut down things because of fear. So, I would encourage you, if you have a terminal illness like mine, or even if you haven’t, to take a few risks and make the most of time you have.

Emily Janes, who is living with MND

Thank

Rowing for a cure: In June, Tilda completed a six-hour, non-stop 50K row across her living room! Tilda, 15, chose to make a difference for people like her Grandma Gill who was diagnosed with MND in 2020, and died just nine months later. “I have been rowing for nearly two years now, but 50K was physically and mentally very challenging, and took me over six hours. As MND has no cure, I want to be a part of solving this issue, no matter how many kilometres it takes!” Tilda’s raised an incredible £1,673.

Lakeside walk proves a success: In July, the North and East Herts and South Herts branches held their first Herts County Walk at Stanborough Lakes in Welwyn. Over 100 people, including wheelchair users, children, families and their dogs attended, all making their way around the beautiful lake to raise funds and awareness of MND. Afterwards, everyone enjoyed a picnic in the open space. The event raised £1,200 and will now become an annual event with a date already in the diary for next year.

In memory of Paul: With help from friends and family, Tina Clarke organised a charity race night in memory of her husband Paul and raised £2,560. Tina says: “Paul would have been so proud of us for organising the event and deeply touched that it was in memory of him. After caring for Paul, I saw first-hand the struggles he had knowing there is no treatment or cure, I feel it’s very important that more research is needed.”

Making a difference: Arabella and Caroline took on an epic 100K non-stop trek along the scenic Jurassic coast in honour of Arabella’s brother who has MND. Arabella said: “Since the day he was diagnosed, he and his family have been so incredibly strong and brave in dealing with the disease and all its challenges. Those who’ve been in a similar position will know how helpless you feel standing on the sideline. Raising money for the Association through this challenge, which is putting me out of my comfort zone, is a way of channeling the excess energy, frustration (and fury on my bad days) that I feel for what my brother and anyone else suffering from this horrible disease is going through.” The team raised a massive £17,800.

Pedal power: In May, 70 riders took part in the annual Roland’s Ride cycle from Darlington’s Mowden Park RFC stadium. The event, supported by SG Petch, had options of a family 20K, a social 50K or elite 100K route. The cyclists pedalled their way around and back to the stadium for a family fun day where they were joined by the Hambleton and Richmondshire Group and raised over £3,600. Since Roland’s Ride started in 2019, they have raised an astonishing £9,795 for MND research and the local MND group.

In support of friendship: Ron McGill completed a gruelling 188 mile Coast to Coast Walk, starting in St Bees and finishing in Robin Hood’s Bay, in support of his close friend and fellow GP Will who is living with MND. Sadly, another good friend and colleague of Ron’s, died of MND in 2004. He said: “I was inspired to raise money for the MND Association obviously because of Will’s diagnosis, but also hearing and seeing what Kevin Sinfield has done for the Association in support of his friend Rob Burrow.” Ron raised an amazing £5,550.

We are family: In June, Brian, with son Liam, daughter Laura and niece Sarah, took part in the Yorkshire Three Peaks Challenge, scaling the 24 miles of the three peaks in just over 11 hours, in memory of his wife Angie, who died from MND in October 2021. “Whilst it was a really tough challenge, it pales into insignificance when you compare it with what Angie and others face when they hear those words: ‘Sorry, you have MND and there is no cure.’ Angie tried and succeeded to live life to the full, remaining positive and wickedly funny throughout. That is why we wanted to raise funds for the MND Association.” The team raised an impressive £4,200.

Susan’s positive path: During April and May, Susan, who was diagnosed with MND last year, along with 180 friends and family, walked the entire length of the Pennine Way. Susan said: “There was a huge sense of team spirit and support, every donation was a collective win; every day walked, a giant triumph – and it was good fun!” Together they raised a whopping £77,000.

In June, Susan was elected to the Board by members as a new trustee.

Putting the ‘fun’ in fundraising: In April, the Hirst family put on a fundraising night for family and friends at the Ripon Rugby Club to raise funds in honour of their husband, dad and Grandad, David. They put together a luxury raffle which sold out in under 15 minutes followed by a live auction. In total, they raised an incredible £18,220 which included a generous donation from the rugby club. The Hirst family didn’t stop there, as David’s son Joshua and his friends took on the Yorkshire Ultra Challenge in July covering 100K in the Yorkshire Dales in order to continue raising funds and awareness.

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

Words of hope for journey ahead

Dear Editor,

My partner, Christine, a radiographer all her working life, started to have cramps in her arms in 2016 but was only diagnosed with MND in July 2018.

After diagnosis, I joined an MND help and information group on Facebook where I found useful tips and guidance. Christine’s MND was slow progressing but there were still lots of hospital appointments and an increasing amount of equipment to assist us at home. Although she declined more rapidly towards the end, she died, thankfully very peacefully, in her chair at home in August. I had kept my promise and nursed her on my own.

A couple of days later, I planned to message the Facebook group to announce I was leaving and to wish everyone the best. I wrote;

‘I have been on this site for a while and gained a lot of information and help. My partner, Christine, passed away on Sunday morning very peacefully and calmly in her chair at home from this beast of a disease.

She had MND for seven years but could still walk a bit, her voice was a bit croaky and she could swallow mashed food. Everybody’s journey is different but what I wanted to say is that her death was not what I was expecting and was a really

nice passing for her. If you are starting on your MND journey do not expect that the end will be awful – think about living with MND, rather than dying from it. As her primary carer, I promised she would be cared for at home and I am proud to say that I achieved that, although it was very hard.

People with this disease and their carers are the bravest of the brave and I will fight and support them ‘til my last breath to see this disease beaten. God Bless You All.’

I thought I’d get a few ‘sorry for your loss’ or ‘well done for looking after your partner’,

which I did. But to my amazement I’ve had over 200 comments – many mentioning ‘hope’.

“I am very scared for the journey and very scared for the end. Your post has given me HOPE. Thank you I really needed to read a story like yours”

“Thank you for taking the time to give us a little bit of hope”

“My father has been diagnosed recently and posts like this are good to hear”

“Thank you, it gives me much hope for my husband’s journey. Thanks for sharing your worthy positive message”

“It is tough and I even had helpers for my son, so I do not know how you coped. This post is very brave and has definitely given me some comfort”

This is probably the greatest thing I have done - to give people hope, something we didn’t have when we set off on our journey. It’s also inspired me to continue to help and support people with MND. Christine was the bravest person I have ever known bar none.

Martin Parkinson, partner and carer

Play the Christmas raffle today!

Our festive fundraiser is back, and this year you could win an amazing top prize of £5,000!

Every £1 ticket sold gives you the chance of winning a fantastic cash prize, but not only that, your support will help to fund vital research as well as making sure that nobody faces MND alone.

Taking part couldn’t be easier. Simply visit www.raffleentry.org.uk/mnda to enter online, or call our ticket hotline

on 0330 002 0342. The raffle closes on 15 December and the lucky winners will be drawn before Christmas on 22

December, so please don’t miss out –play today.

As well as buying tickets yourself, you may also be able to sell some to friends, colleagues and neighbours. If you’d like more raffle tickets, please call us on 0330 002 0342.

Regulations mean that entry is open to all UK residents excluding Northern Ireland, Jersey, Guernsey and the Isle of Man. Tickets are not for sale to or by anyone under 16 years of age.

About usA heartfelt poem for a much-missed son

The Motor Neurone Disease (MND) Association

Sylvia Maclagan who now lives in Buenos Aires, Argentina would like to share with Thumb Print readers the prize-winning poem she wrote about her son Patrick, who died from MND aged just 29 years. Earlier this year she entered it into a poetry competition and was delighted to win first prize.

To Patrick

I’ll just dream these lines, since you’re no longer here; your voice, your laughter and your soul are sunflowers in the summer air; I know you stole their light to fill my waking hours with Irish cheer. My love for you is wedded to the morning’s elemental time, a coffee cup and friendly chat. I spy the raindrops sparkling on your jaunty cap my heart recalls each time the doorbell rings three times. I hear the lively flute you’d play for many radiant years; and in the knowledge that you were going to die, I prized Commencement Day, the youngster in the park who sketched your image on artist’s paper. I know God shows the way, absence, instants in life’s troubled pilgrimage.

Sylvia Maclagan, a mother

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 using the links below, on our website at www.mndassociation.org/ mndmatters or search MND Matters in your chosen podcast provider.

Episode 18 – Your signature is more powerful than you think

In this episode, a local branch member and three researchers discuss the difference that gifts in Wills can make to the funding of vital MND research as well as providing help and support to people affected by MND. https://spoti.fi/3cysKPV

Episode 17 – Misha Grimes

Social media influencer Misha Grimes’ dad died of MND in August 2021. She became a carer for him during his illness and in this episode, Misha talks to us about her family’s journey from John’s diagnosis. https://spoti.fi/3QZYMmx

Episode 16 – LGBTQ+ Pride Month

Celebrate Pride month with the MND Association. MND does not discriminate, it can affect anybody – including the LGBTQ+ community.

In this episode, we bring together Sam, who is living with MND and Angela, a volunteer at Opening Door, to discuss fully inclusive health and social care, and why it’s vital for all people living with MND regardless of their sexuality. https://spoti.fi/3czxtkb

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

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 expe riences and support each other.

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.

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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