Thumb Print - Winter 2022

The magazine of the Motor Neurone Disease Association

Thumb Print Winter 2022

BEATING MND TOGETHER Setting out our strategy for 2022 and beyond

Fo or MND

GAZE COMPATIBLE

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, part of the

family

Pages 4-5 £50 million catalyst will transform MND research Victory for United2EndMND campaigners

Welcome…

Pages 6-7

2021 was, without doubt, one of the most significant years in our Association’s history.

‘Go and set the world on fire!’

32nd International Symposium on ALS/MND ends with rallying call

Page 10 Our promises to you The Association launches its new strategy

Page 11 Our year in numbers What we achieved together in 2021

Pages 20-21 ‘Would I do it all again?

Absolutely’ Kevin Sinfield reflects on his extraordinary Extra Mile challenge

Pages 36-37 Thank You Our fundraisers take centre stage

Pages 38-39 Members’ letters A selection of letters from our members

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: Clare Brennan, Editor, 01604 250505 editor@mndassociation.org If you have comments or feedback about the magazine and its content, please do not hesitate to get in touch.

Together, we’ve achieved more in the past year than we ever thought possible – every story shared, every penny raised, and every email or letter sent to spread the word about MND has brought us to this moment – and we couldn’t be more grateful for your support.

Now, with the promise of £50 million of investment from the Government over the next five years to accelerate research into MND, thanks to the incredible success of the United2EndMND campaign, we have never been better placed to beat MND - once and for all.

That’s why, instead of New Year’s resolutions, we’re starting 2022 with five promises – promises we are making to our members and everyone living with or affected by MND – which will guide our work in the coming year and beyond.

With the support of our community behind us we won’t rest until: • • • • •

MND becomes a treatable disease You get the care you need when you need it Every day counts You are heard No one has to face MND alone.

We know how important these promises are to people living with MND and we don’t take them lightly.

You can read more about our promises and the work we are already doing to keep them on Page 10.

Together, we will beat MND.

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.

Thumb Print is available to read online and as a downloadable pdf at www.mndassociation.org/thumbprint

Sally Light Chief Executive

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United2EndMND campaigners visited Westminster in October last year

£50 million catalys transform MND res A

£50 million investment in MND research will be ‘transformative’ and could cut the time it takes to develop new treatments from decades to years.

That’s the view of Professor Chris McDermott from the Sheffield Institute for Translational Neuroscience (SITraN), who appeared on BBC Breakfast in November to discuss the Government’s plans to invest £50 million in targeted MND research over the next five years.

The Government announced the investment in November, as part of a wider package of funding for neurodegenerative diseases, in response to the hugely successful #United2EndMND campaign run by the MND Association, MND Scotland and My Name’5 Doddie Foundation, and with people living with MND. Professor McDermott said: “The £50 million will be a catalyst and it is going to be transformative in bringing treatments forward for MND. MND has

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been sitting behind an impenetrable wall, but over the past few years, chinks have started to appear. Now we can break into the chinks, rip them apart, get in there and begin to develop meaningful treatments for MND. “We have been making progress, but it hasn’t been fast enough. That work would have continued, and we would have got there, maybe in decades, but now I think we will get there in years.”

Professor Chris McDermott

Professor McDermott explained the funding will revolutionise the way clinical trials are carried out, making them more ‘nimble and inclusive.’

He said: “We will screen hundreds and thousands of new compounds and old compounds and identify which show the most promise and rapidly pull them into a pipeline where we will validate how the drugs are working. We will then take them into nimble clinical trials using new biomarker readouts which tell us if a target is likely to work within months.

They will then be fast-tracked into clinical trials and the way we run clinical trials will be very different. They will be more inclusive – anyone who wants to participate in a trial will be able to do so and they will be ‘low burden’ – people will be able to participate in their own homes.”

The announcement was also welcomed by the Association’s Chief Executive, Sally Light. She said: “This announcement is the game-

What our campaigners say: “It’s taken a long time for us to get MND on the scientific agenda – for most of the 150 years since it was first recognised as a disease it wasn’t seen as a target for research. That’s changed. In the last 25 years, I’ve seen more and more people across the world interested in understanding the disease, identifying causes and discovering treatments. And in the last decade, that explosion of new knowledge has turned MND into one of the fastest moving fields of neurological disease research.

This Government funding along with the continuing support from charities and, we hope, further investment from industry, gives us the very best springboard to turn what we know now into effective treatments and, ultimately, a cure for this devastating disease.”

Dr Brian Dickie, Director of Research Development at the MND Association “The UK has some of the world’s top MND researchers. A boost to MND research funding like this will make a big difference to what we can do and help accelerate the search for a cure. We are very grateful to all the people who have campaigned so hard to make it happen.”

Professor Ammar Al-Chalabi, neurologist and MND research specialist at King’s College London

st will earch changing news everyone in the MND community has been hoping – and campaigning – for. This funding will drive MND research forward towards treatments and a cure and will give people who have been diagnosed with this devastating terminal illness hope.

“So many dedicated people have campaigned tirelessly with us on this issue, and we are very grateful to every single one of them. It is no exaggeration to say these funds will change lives – and ultimately save lives.”

The idea for a research institute was first put forward by campaigners David Setters and Lee Millard who are both living with MND. While they welcomed the announcement, they said ‘the real work starts now’ to determine how the money will be allocated and spent.

For more information about the #United2EndMND campaign visit www.mndassociation.org/ united2endMND

“It is fantastic news for the MND community. So many people have campaigned for this level of funding for MND research, and it will mean so much to all those people to have had their voices heard. It really feels like we are on the brink of something special with MND and that hope is such a boost to all of us who are dealing with MND.” Rob Burrow, MND Association patron “I’ve been buzzing since the news was announced. But, I feel like a cricketer who has just reached his century. Enjoy the moment and then retake your guard, ready to reach your next goal, which is, of course, the first meaningful treatments for MND. I’m also thinking of all those we have lost, particularly since I was diagnosed nine years ago. I’ve been fortunate with my slow progression, and that makes me determined to keep trying to make a difference until we have a world free from MND.” Campaigner, David Setters “I received a terminal diagnosis of MND when I was 37 and my little girl was just one. I was devastated to learn that there was no treatment and no cure. This new pledge of £50 million from the Government brings hope to all of us who have had our lives destroyed by MND. We need to ensure that this money becomes available quickly as we have never been as close to a breakthrough as we are now. Let’s end MND.” Emma Moss “There is huge excitement among MND patients at this news. We have real hope for the first time since our diagnosis. Those of us with young children now dare to dream that we might see them grow up. Thank you Boris Johnson and Sajid Javid.”

Nicola Waters “My husband Alan had MND, and we campaigned for the Association during awareness week in 1998. I have fabulous memories of travelling to Downing Street to meet Cherie Blair and what we achieved then feels important today – it’s very special. Alan died when he was just 45, but he’ll always be remembered.”

Lynn Roxburgh

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‘Go set the w T

HE MND Association’s 32nd International Symposium on ALS/MND ended with a rallying call to delegates – ‘Go set the world on fire!’

The call was made by Steve Gleason, who is living with MND and is the founder of projects including Team Gleason and Answer ALS. He closed the four-day online Symposium, which was attended by 1,500 delegates from 44 countries, by explaining how technology can play a vital role in improving

Pictured from left to right are Professor Janine Kirby, the Association’s Head of Research, Dr Nick Cole, the Association’s Director of Research Development, Dr Brian Dickie, Professor Ammar Al-Chalabi and Professor Kevin Talbot

quality of life. He also used his speech to inspire researchers to do even more.

The event had begun on 7 December with the Stephen Hawking Memorial Lecture, supported by The Stephen Hawking Foundation. It was delivered by Dr Jennifer Doudna, joint winner of the 2020 Nobel Prize for Chemistry for her ground-breaking development of CRISPR-Cas9, a genome engineering technology that allows researchers to edit DNA in cells. This technology is used in MND research to understand more about motor neurons that contain genetic changes associated with the development of the disease. In her lecture, Jennifer discussed how this technology can be further developed in pursuit of effective therapies.

The Symposium was then split into nine sessions, each focusing on different topics, including clinical trial updates to cell biology, clinical management and cognitive change. Research updates were given on how proteinfolding machinery becomes faulty in neurons, innovative developments in drug discovery and advances in ways to measure cognitive change and optimise nutrition in those with MND. There were also talks on current genetic testing practices and considerations for the development of gene therapies, as well as new insights from further analysis of phase 2/3 clinical trials results.

Dr Sabrina Paganoni presented the long-term functional and safety results from the CENTAUR trial of AMX0035,

Symposium Highlights Industry-sponsored sessions Some sessions of this year’s Symposium were hosted by our sponsors. Industry sponsors who presented at this year’s event included Biogen, Apellis and Mitsubishi Tanabe Pharma America. These sessions focused on research areas such as optimising clinical trials, the benefits of using real-world data alongside clinical trial data and the ethics of genetic testing in MND. As well as these sessions throughout the Symposium, our principal sponsor Cytokinetics held a pre-symposium session on Advancing innovation in ALS. These industry-led sessions help to provide new insights into the ways in which MND research can advance.

Poster Presentations Throughout this year’s Symposium, around 350 ePosters were presented in the ePoster Hall. The ePoster Hall enabled many researchers to share their work with other delegates in a short presentation. The ePosters presented were on many different topics of research from genetics to clinical imaging

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to experimental models of MND. There were awards given for the best poster in each research category and delegates could vote for their favourite poster. The winner of this poster prize was Danielle Boyce who presented her work entitled An assessment of the ALSFRS-R by the ALS Community: A mixedmethods study.

Awards Each year at the Symposium, several awards are given to researchers to congratulate them on their commitment to MND. Two of these awards are presented by the International Alliance for ALS/MND Associations- the Humanitarian Award and the Forbes Norris Award. The Humanitarian Award, which recognises someone who has made a significant non-scientific contribution to people with MND, was awarded to Dr David Taylor, Vice President of Research at ALS Canada. The ForbesNorris Award, presented in memory of neurologist Dr Forbes Norris to someone who delivers outstanding care to those with MND, was won by Dr Adriano Chio, Professor of neurology and director of the ALS Centre at the University of Torino, Italy.

orld on fire!’

A few of our international speakers

Professor Julie Atkin

Professor Robert Bowser

Dr Lucie Bruijn

Dr Jennifer Doudna

Dr Angela Genge

Dr Heike Gudat

Dr Ronenn Roubenoff

Professor Lorenz Studer

an investigational drug compound made up of sodium phenylbutyrate and taurursodiol to reduce neuron death.

Results from the open-label extension study suggest that earlier initiation and longer duration of treatment with AMX0035 lead to long-term benefits for those with MND. A Phase 3 trial, called PHEONIX, is currently underway to confirm these findings.

There were also updates from two further clinical trials in the ‘breaking news’ section.

One of these trials was the Phase 3 trial of Tofersen, a gene therapy which is being tested for those with MND who have a mutation in the SOD1 gene. Although this Phase 3 trial did not meet its primary endpoints, the data did show some effects on biomarkers in those with fast progressing MND. The second trial to present data in this session was the Phase 2 trial of CNM-Au8, an investigational treatment using gold nanocrystals that aims to improve the energy production in neurons. CNM-Au8 is currently being tested in a larger population through the Healey Platform Trial.

Work has already begun on plans for the 2022 Symposium which is due to be held in San Diego next December. For the very latest news, visit https://symposium.mndassociation.org, or the very latest on MND research, head to the research blog at https://mndresearch.blog/ The latest episode of the Association’s podcast, MND Matters, explains more about the Symposium’s history, what it’s like to broadcast to 1,500 researchers and healthcare professionals around the world and what we have learnt. You can download and listen at www.mndassociation.org/podcast

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‘If Olly knew what I was doing I know he would be thrilled’ FATHER, whose son died from MND aged just 41, has volunteered to help others affected by MND by becoming an Association visitor (AV).

Paul Joynson’s son Olly died from MND in August 2020 leaving their family devastated but determined to do everything possible to raise funds and awareness of MND. Last year, Paul published a book of poems he and Olly created together called The Mingoes and their Amazing Adventures to raise money for the Association, but as time has passed, Paul has found himself wanting to do more.

“I have lots of experience having cared for Olly and I would like to use it to help others affected

by MND. It’s a vile disease - there’s no other word for it – and I want to do everything I can.”

“If Olly knew what I was doing I know he would be absolutely thrilled,” Paul explained.

“I don’t believe I am anything special, but I have always wanted to give something back to the Association. I have no doubt that Olly had a better experience because of the care and support we received from the Association.

“I have lots of experience having cared for Olly and I would

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like to use it to help others affected by MND. It’s a vile disease - there’s no other word for it – and I want to do everything I can.”

Paul’s first step was to register his interest with the MND Association and enrol onto an AV training programme.

He said: “The training has been fantastic – really thorough. There’s a lot to do and a lot to learn but I’m looking forward to getting started.”

The Association’s Area Support Co-ordinator (ASC) for Herts and Essex, Carmen Brown said: “Paul has settled in exceptionally well with his local group and works closely with the other AVs to support people locally. He is also providing valuable support to people on a one-to-one basis and it’s clear to see he is driven by his passion to help others and to honour his son’s memory.

“We are always very keen to get more diversity into our volunteer workforce. In Paul’s area, all the AVs are female and having a male AV has been very much welcomed.”

You can find out more about the volunteering opportunities available in your area by visiting our website at www.mndassociation.org/volunteering

Paul Joynson, who wrote a children’s book to raise money for the MND Association, is now volunteering as an Association visitor (AV)

Paul’s son Olly, who died from MND in 2020 aged 41

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Volunteers help us to make the difference

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S we start another new year, I want to take a moment to thank our extraordinary volunteers who continue to do so much to support the Association’s work.

To us, and the wider MND community, the contribution our volunteers make is quite simply, priceless.

Whether it’s campaigning, organising a support group, helping out at a local branch or group, raising money, or reaching out to someone living with MND when times are tough, our volunteers really do help us to make the difference.

If you have ever considered volunteering for the Association there has never been a better

time to get involved. There are a wide range of opportunities to suit everyone, whether you have lots of time to spare, or just a little.

And if you want to take a leading role in helping to drive the Association’s work forward in 2022 and beyond you may wish to consider taking part in our trustee elections in June. More details about the work of trustees are available on our website at www.mndassociation.org/ trustees As ever, thank you for your continued support and happy new year.

Richard Coleman, Chair of the Board of Trustees

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Our promises for 2022 and beyond

2022

marks an important year for the MND Association, as we commit to five promises, aimed at focusing our efforts and harnessing the hope within our community for a world free of MND. After more than 40 years, there is more knowledge, more co-ordinated care and more support than ever for people with and affected by MND. But it’s not enough.

Our five promises give us a renewed focus to work faster and fight harder to strive for better. We know you want to do the same because a number of you helped us to shape these promises, bringing your knowledge, passion and dedication to the discussions.

And we know there is a real drive within our community to make this happen. Now we’re asking you, our members, and others within the MND community to join forces with us so we can beat MND together.

With your help, we promise: • MND is treatable and ultimately curable • You will get the care you need when you need it • Every day will count • You will be heard • No one will face MND alone Work has started. We already have five projects underway to kickstart our journey towards delivering on our promises.

We would love you to join us in delivering on our promises. Find out more by visiting our website www. mndassociation.org/MNDPromises

OUR PROMISES WE WON’T REST UNTIL… IS 1 MND TREATABLE

AND ULTIMATELY CURABLE

NO ONE FACES MND ALONE

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YOU ARE HEARD

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Promise 1: MND will become a treatable disease We are seeking new collaborative drug discovery and development projects, helping to fund and facilitate the research that is taking us ever closer to uncovering the causes of MND, effective treatments and ultimately a cure.

Promise 2: You will get the care you need when you need it Co-ordinated multi-disciplinary care is the very best way to ensure a person with MND has access to all the healthcare professionals they need, at the right time. Our 22 care networks across the country provide this. But not everyone with MND has access to the same level of support. That must change.

EVERYONE GETS THE CARE THEY NEED WHEN THEY NEED IT

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Promise 3: Every day will count For people with MND, technology can help life be the best it can.

The MND Association Think Tank is working with tech giants from around the world to find solutions to real-life problems.

Promise 4: You will be heard If we shout louder and to the right people, things will change. If we all join together we can’t be ignored.

Promise 5: No one will face MND alone We will work to break down barriers that prevent people with and affected by MND from accessing the help and support they need.

Raffle raises £140,000 to support people with MND

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HANK you to everyone who bought and sold tickets for our Christmas raffle, raising more than £140,000 to support people living with MND. Congratulations to Christine Morrall who won £5,000, Derek Saunders, who won £1,000 and Edward Severn, who

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won £500. A full list of winners is available at www.mndassociation.org/raffle.

If you didn’t win this time don’t worry – full details about the Association’s summer raffle will feature in the spring edition of Thumb Print.

The difference we made in 2021 Thumb Print takes a look back at the Association’s year in numbers and how, together, we have continued to make a difference.

6,800 calls were answered by our helpline MND Connect

£3.3 million of new funding invested in research

1,500

£15,135,988 is the value of the Association’s research portfolio

£500,000

people from 44 countries attended our online Symposium in December 2021

10,500

additional funds for translational members inspire our work research and are at the heart of everything we do

177 MND Emergency Support Grants worth over £43,000 were distributed

339 Association visitors and Association visitor co-ordinators provided one-to-one support to people living with MND

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73,477

people joined our virtual AGM in October

pieces of information were downloaded and sent out during 2021

£37,892 worth of grants were awarded to 160 children and young people affected by MND

£1,158,671 worth of support grants were distributed to 1,682 people living with MND

4,500 00 unique page views were recorded on MND Buddies, s our online hub for children affected by MND

£1.19 million of eligible benefits was claimed by people affected by MND through the Association’s Welfare Benefits Advice Service

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Together we can #TakeOverMND

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HIS January our fundraisers are coming together to #TakeOverMND and there are lots of ways you can join them.

From running events to gaming weekends, the MND Association has got you covered with events that will challenge and inspire you. Every penny raised will help to make a huge difference in the fight against MND. Susan Fletcher Watts was diagnosed with MND in July last year. In April she will be realising one of her ambitions; to walk the Pennine Way. She said: “When I was first diagnosed, the last thing I wanted to think about was my ‘bucket list’ because it only emphasised the terminal nature of MND. Now, I feel able to plan for a few of those special holidays.

“My neurologist has told me that I should be OK, provided I walk it before Summer 2022. I’ve asked all my friends, family and colleagues to join me for as much or as little as they choose, and I’ve turned the walk into a fundraising project.

We are pleased to be raising money for the MND Association who have been such a huge support.”

Zoe Berry is also supporting the campaign by sharing her story. Zoe’s dad, Darren died from MND in 2019 and in October she discovered she is carrying the gene that can cause inherited MND. She said: “When I got the confirmation, I was in shock. My heart broke all over again. I think the scary part for me is not knowing what or when anything will happen.”

Despite the crushing news, Zoe is determined to spend her time doing something positive. She is sharing her story through an online blog, MND & Me and has been busy planning fundraising challenges including a skydive.

She said: “It has given me even more motivation and drive to get out there and be proactive about fundraising. It’s too late for Dad, but it’s not too late for me.”

There are lots of ways you can get involved in fundraising events to help support the MND Association and our fight against MND.

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was well organised and had a good atmosphere, so I signed up. It was an unforgettable experience, and it would be great to get more #TeamMND runners there this year!”

Dive in for the Great North Swim, like Danielle Danielle Beaumont took part in the Great North Swim last June. She said: “We had an amazing five years with my uncle Charlie after he was diagnosed with MND. He used that time to raise funds and awareness for the Association so it’s a cause close to my heart. When my friend’s grandma was diagnosed too, we decided to take ourselves out of our comfort zone to raise money and signed up for the Great North Swim.

“Lake Windermere is no joke. Standing on the lakeside waiting to start felt quite intimidating, but once you got started on the first lap it felt great. It was hard but totally worth it, knowing we were swimming to help find a cure.”

Susan Fletcher Watts was diagnosed with MND in 2020 and will be walking the Pennine Way

Find a running event near you, like Naved The Yorkshire Marathon in 2019 was Naved Akhtar’s first marathon for the MND Association. He decided to take part after his uncle Muhammad Saleem was diagnosed with MND. He said: “My uncle was a kindhearted soul with a passion for the work he did and outside of work always helped others. It was saddening to see someone so active, with so much life to do things, suddenly not being able to.

This disease came from nowhere, slowly shutting down his body, leaving him unable to walk and talk.

“I was motivated to raise money to help find a cure for this horrible condition and support other families affected by MND. I knew this event

Organise your own event, like Tamara Tamara Turchet’s challenge, which lasted almost a year, has seen her completing a different challenge each week to mark her 50th birthday. She has recorded the challenges and shared the videos to inspire people to donate.

Although Tamara didn’t have a personal connection to MND, she felt it was a well deserving cause to raise money and awareness for. However, she has since learnt of several friends who have family members affected by the disease.

She said: “I simply cannot begin to imagine what it must be like to be in their shoes. But if I were, I would be relieved to know that others might be there to help me fight the best fight I could.”

For more ways to get involved, head over to our website www. mndassociation.org/takeoverMND You can also listen to the Association’s podcast MND Matters.

Visit www.mndassociation.org/ podcast to listen to the latest episode.

Ollie’s challenge in memory of his nana

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ONGRATULATIONS to Ollie Glover who recently took part in a Lidl Tough Mudder event in Grantham to raise money for the MND Association.

Ollie was inspired to take part in the challenge by his mum, Franca, who ran a half marathon in 2019 raising £1,000. She decided ran in memory of her mum who died in 2019 having lived with MND for four years.

“Ollie worried every day about this challenge, but he kept thinking about his nana and the thought of helping others pulled him through.”

Franca said: “Ollie and I miss her so much and knowing how much she struggled everyday made us think about helping other families and nanas alike.

“Ollie worried every day about this challenge, but he kept thinking about his nana and the thought of helping others pulled him through.”

The Lidl Tough Mudder is designed for children aged 5-12 with children taking part in the event competing along a mile-long muddy obstacle course.

Fynley and Harvey spread the word about MND

Congratulations to our competition winners!

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ONGRATULATIONS to the winners of the Association’s Christmas card competition – Isaac and Elliot!

Seven-year-old Isaac’s picture of a reindeer saw him win in the eight years and under category, while Elliot, who is 13, came out top in the nine-16 years category.

Once printed, both cards will be available to buy in our mas. online shop next Christmas.

To see all the entries, visit our gallery at rg/ www.mndassociation.org/ christmascard

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HANK you to Sue Hodges, who is living with MND, for sharing this picture of her great nephews Fynley and Harvey.

She said: “They both turned up at my house wearing their MND Association t-shirts. Harvey took great joy in telling me all about MND, and how it was what Auntie Sue has got. Harvey is going to hopefully speak to his class about MND and wear his t-shirt in class. They have both sent pictures to their teachers.”

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An important year for MND research From investment in translational research to significant progress in clinical trials, 2021 has been an important year for the research community. Here is an update on some of the biggest stories of the year.

Translational Research Fund: The MND Association, together with medical research charity LifeArc and the My Name’5 Doddie Foundation have established a £1.5 million translational research fund aimed at realising effective MND treatments more quickly. Each organisation has committed £500,000, with the MND Association committing funds raised by Kevin Sinfield during his 7 in 7 marathon challenge. Researchers from across the UK and the Republic of Ireland have been able to apply for grants of up to £500,000 for translational research projects which are focused on developing new therapies or repurposing existing treatments for MND.

Clinical Trials: We have been closely following clinical drug trials: • Several drug trials are now fully recruited, including MIROCALS - a trial for interleukin-2 - and TUDCA-ALS (a trial for tauourdeoxychlorid acid).

• Other trials have opened recruitment in the UK, including FOCUS-9, a trial for WVE-004; MERIDIAN, a trial for pegcetacoplan and ATLAS, a trial for Tofersen in pre-symptomatic carriers of SOD1 mutations.

Several trials also announced results: • CENTAUR, a trial for AMX0035, is moving forward and is now pursuing a larger trial (PHOENIX) to determine the safety and efficacy in extending the life of people with MND. • VALOR, a trial for tofersen, did not meet its primary endpoint in significantly slowing disease progression. However, there were potentially encouraging indications when looking at other measures of disease activity. The company running the trial, Biogen, announced the expansion of the ongoing early access programme, so that more people

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with MND caused by SOD1 gene mutations can receive the trial drug.

• RESCUE-ALS, a trial for CNM-AU8, did not meet its primary endpoint of preventing motor neurone loss, but it did show some evidence of benefit in long-term survival. The same drug is also being tested in the Healey Platform trial where enrolment has been completed.

One example is Dr Arpan Mehta, our Lady Edith Wolfson Clinical Fellow jointly funded in partnership with the MRC, who published research highlighting how improving function of the mitochondria – the power supply of nerve cells – could be a potential treatment for MND. This work paves the way for the generation of novel therapies targeted at boosting energy levels in mitochondria in MND.

Research we fund As of 31 December 2021, our research grants portfolio is approximately £15.1 million, which consists of 83 grants that we are committed to fund. In 2021, we awarded new funding of £3.3 million and an additional £500,000 for translational research fund.

To find out more information about anything mentioned in this article please check out our MND research blog at https://mndresearch.blog/.

The blog is the perfect place to keep up to date on all the latest research news.

Musician uses his talents to raise awareness of MND

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MUSICIAN who is living with MND has written a song to help raise awareness of the disease.

Neil Cardall, pictured, who has been a musician for many years, took to his keyboard to write the song, MND it’s not for me, to coincide with Global MND Awareness Day last June.

He explained: “Some of the songs I write have been influenced by events in my life and I thought it was about time I wrote a song about MND. I haven’t been able to play the guitar for several months, but I can play a certain amount on my keyboard and the song soon began to take shape.

“I’ve been a musician since I was a young child. My grandad had a dance band, my dad played the keyboard and my uncle was the guitarist, singer and saxophonist. I would often be asked to go along to a gig and play double bass.

“I’m inspired by artists like David Bowie, The Beatles, The Sensational Alex Harvey Band, Slade, Neil Young and Neil Diamond.”

You can listen to Neil’s music online at www.reverbnation.com/neilcardall

Counselling service provides a listening ear

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EOPLE living with MND across Sussex have benefitted from the launch of a counselling service.

The service, which is being run by trained counsellors from Sage Counselling, an organisation which specialises in supporting people with limited mobility, has been funded by a legacy generously donated to the West Sussex Branch.

To date, 68 people living with or affected by MND have been referred to the service, many of them shortly after diagnosis.

Helen Clifford Jones, who is Chair of the West Sussex Branch’s legacy committee said the introduction of the service had been well received.

She explained: “In 2016, we received a very large sum of money in the form of a legacy to help benefit people affected

by MND. Some of the money went to help with the creation of the care and research centre for Sussex, while some helped to fund a research studentship.

We also felt that we wanted to do something to help support quality of life, and the impact being diagnosed with

MND has on both the individual and their family.

“Feedback from the sessions has been very positive. One person said the sessions had allowed them to share important thoughts, while another said it had helped them feel less alone and frustrated. Someone also told us the sessions had helped them to come to terms with the death of their husband.”

Before meeting people affected by MND, counsellors from Sage took part in special training sessions to help them understand more about the disease.

“One person said the sessions had allowed them to share important thoughts, while another said it had helped them feel less alone and frustrated.”

Lynn Bertram from Sage Counselling said: “The sessions are flexible depending on the needs of the individuals and our counsellors are working to provide a safe space where people affected by MND can talk openly about their feelings.”

The service is currently being evaluated in the hope it will become sustainable as a locally commissioned service.

Find out more about how a legacy is helping to make a difference to people living with MND in East Sussex on page 28. www.mndassociation.org

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‘MND is ruthless… but In September 2021, Richard Kyson’s beloved dad, Colin, died from MND almost a year after being diagnosed. Here, Richard shares extracts from a blog he wrote throughout the year to explain more about his family’s experience of MND. 21 JANUARY 2021

Richard’s dad Colin who died from MND in September 2021

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My dad was diagnosed with MND in October 2020. I was devastated.

The symptoms started in June 2020 and began with him coming home from work and saying how weak he felt generally, how he was losing the ability to grip the ratchet straps on his truck and had pain in his shoulders. We brushed it off saying that he was just tired, and he needed to rest. Throughout the summer, he was working regular 13-14 hour days consisting of driving upwards of 500 miles a day.

As the summer progressed, Dad started to have regular falls, where his knee would give way and he couldn’t stop the fall. It was really tough seeing Dad come home with cuts, bumps and bruises.

The weakness and pain never subsided, even with rest, and the falls continued, so we thought it was best to check it out.

The doctor sent Dad for MRI scans on his spine, neck and head as we thought it could be a nerve issue. Maybe a nerve was being squeezed and causing the symptoms he was experiencing? In my head I was fearing the worst. The results of the MRIs came back and there was nothing obvious wrong. Again, I was thinking the worst.

A week later, Mum and Dad headed back to see the neurologist. I had a horrible feeling all night, waiting for them to come home with the news. I was sitting in the kitchen waiting for them to get home. The door opened, they walked in, very quiet and sat down with me. Admirably, Dad cracked a joke that he had a new car. I was confused.

He said, ‘I’ve got motor neurone disease.’

Bam! That hit me like a train. The news

we are doing our best’ I never wanted to hear had become a reality. I instantly broke down. I couldn’t believe it.

can just about walk a few metres with the aid of a walker.

8 SEPTEMBER 2021

23 JANUARY 2021 Yesterday was a tough day. It was Dad’s 65th birthday.

We tried to spoil him as best as we could, but it was a very emotional day.

Dad got lots of wine and Champagne delivered and this choked him up as he desperately wants to see family.

Dad’s brother, my uncle, Tony and his family had made Dad a photo album of memories we had never seen before.

We also had a delivery of three lots of hand-made birthday cakes from my cousin’s wife, all of Dad’s favourites! He’s slowly working his way through all of it, with a little help from me, Mum and Sam! I couldn’t write this without mentioning an amazing gesture from Wycombe Wanderers. I was surprised and amazed to be sent a video message from Gareth Ainsworth, the Wycombe manager, wishing Dad a very happy birthday.

There are things we can do to help Dad but the things that distress him are things we can’t really help with. I asked him yesterday, ‘What is it that frustrates or distresses you most? ‘What do you wish you could do the most?’

I got a croaky, sad, one word answer, ‘Everything’.

In my experience with MND so far, there are good and bad days. The bad days often outnumber the good, but we try our hardest to make the bad days manageable and we always get a laugh out of Dad at some point. The good days aren’t good really, but they are days where Dad doesn’t have pain, he is able to feel a bit like his old self and he has a smile on his face.

And thankfully today is a good day.

Dad is smiling.

Colin, with Richard and daughter, Sam

3 MARCH 2021 Conversations have started to progress in terms of a longer-term plan for Dad. This week we had someone out from social services to discuss disabled facilities such as a downstairs wet room and potential living space. While Dad is still able to use the stairlift to get upstairs, we all know that a time will come where it’ll become too much effort and distressing for him. The adviser who came to our house was brilliant. We will see in the coming weeks if anything comes out of the discussions and whether we can get any improvements to enhance Dad’s quality of life.

Those that are going through a similar experience will know how hard it is to prepare people for how much Dad has deteriorated since they last saw him.

What is surprising me is the speed of it. I’ve read a lot about MND and how deterioration can be quick, but also very slow. My guess is that in Dad’s case it is on the quicker side. Six months ago, Dad was still working, driving around the country, walking, lifting. Now, he has little to no use of his arms and hands. He

To anyone that has gone or is going through MND, I can’t imagine how hard it is. I think it’s hard as a carer, times that by 100 to get somewhere near to what Dad must feel.

My mum, sister and I are the main carers for Dad. Only those who have experienced it, or similar, will know how draining this disease is. All we are told by healthcare professionals is how amazing we’re all doing. Yes, it’s nice to hear this, however you can’t help but wish you could do more.

MND is ruthless. Just when you think you have a grip on the symptoms and maintaining Dad’s quality of life, bam! another issue smacks us all in the face.

I must keep reminding myself, Mum and my sister Sam that we are doing our best and that is all that we can do. We must keep Dad’s quality of life as best as we can. The rest is out of our control.

14 SEPTEMBER 2021 Last night, at 11.45pm, Dad passed away. Relaxed and without suffering, our loved ones already up there took him peacefully in his sleep.

Mum, Sam and I have a huge overwhelming feeling of relief. And that relief is for Dad, he is no longer in pain or held captive as a prisoner inside his own body. For that, we are thankful.

This is the final chapter in my journey of living with MND. I hope it helps someone out there with their battle against this awful disease. I must say a huge thank you to close friends and family who have been incredible. Family is everything.

To read Richard’s blog in full visit https://richardkyson.medium.com/livingwith-mnd-9228e6b55026

The MND Association is here to support anyone who is living with or affected by MND. You can find more information about the support available on our website at www.mndassociation.org

www.mndassociation.org

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Support to help you get out and about F

OR many people with MND or Kennedy’s disease, getting out and about can feel a bit daunting if mobility is challenging.

Whether you’re going about your daily life or thinking about a holiday, you may need to plan ahead.

To help, the MND Association has developed a new booklet called Getting around to offer guidance and support on making journeys easier. The guide is the latest in our range of booklets and brings all of our previous content on driving, travel and holidays together in one place. It contains hints, tips, and information about driving schemes such as Motability, Blue Badges and the Sunflower Symbol which could help you feel more confident to carry on getting out and about independently. There is also guidance about what to consider before setting off, and where to find further information and support, so you can have the smoothest journey possible.

During development one of our user reviewers told us: “I have had Kennedy’s disease since 2003 and there were several details in the booklet I was not aware of.”

Getting around also contains guidance about driving. Making the decision about whether to carry on driving or not can be a very emotional one. You might be very keen to carry on for as long as possible, but unsure if it’s safe to do so. There are things you can do to help you make these big decisions, such as having a driving assessment or exploring vehicle adaptations.

One member agreed and told us: “My husband was assessed for driving when his legs became too weak and had hand controls fitted to our Motability car, which enabled him to drive for several more months. It was very important to him that he

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ing could continue driving ble.” for as long as possible. pe Wherever you hope to go this year and however you want to get there, knowing who is there to support you can d. help you plan ahead.

You can order a printed copy of our guide via our MND n 0808 802 6262 or by Connect helpline on emailing mndconnect@mndassociation.org. To download it, visit www.mndassociation.org/careinfo.

New initiatives to make your journey easier

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FORUM has helped to launch two new initiatives to help disabled road-users feel more confident about getting out and about.

The Roads for All Forum has been formed by police, fire service, Department of Transport and a number of organisations including the MND Association, to help National Highways improve the road network and services for everyone.

As part of its work, the forum has been involved in creating access guides to help disabled people and their carers find

out more about the facilities available at the 114 motorway service stations across the network. The guides are available either online at www.accessable.co.uk or via the app.

At the same time, drivers with a disability that isn’t visible can now display a Hidden Disabilities Sunflower on their vehicle to let the emergency services, and other road users know they may need additional support, help or a little more time.

For more information visit www.hiddendisabilitiesstore.com

www.mndassociation.org

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‘Would I do it again?

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EVIN Sinfield OBE captured the hearts of the three nations once again in November when he ran the equivalent of four marathons in 24 hours as part of his epic Extra Mile Challenge – and raised an incredible £2 million.

Kevin, who joined the coaching staff at Leicester Tigers Rugby Club earlier this year, took part in the 101-mile run to honour his best friend and former Leeds Rhinos teammate Rob Burrow OBE, who was diagnosed with MND in 2019.

The Extra Mile Challenge, which saw Kevin run from Leicester Tigers’ Mattioli Woods Welford Road Stadium to the Leeds Rhinos Emerald Headingley Stadium in Leeds, took place a year after Kevin raised £2.7 million by running seven marathons in seven days. To date, Kevin, who is a patron of the MND Association, has raised almost £5 million to support people living with MND and their families, and further MND research.

Speaking in The Extra Mile, a documentary which shares the inside story of the challenge, Kevin said: “The awareness has been fantastic – a lot more people in the UK are now educated about MND compared with a year ago. But the funds we have raised are also terrific. We set ourselves a £100,000 target but we didn’t know if people would have the same appetite to donate as they did a year ago. For it to achieve what it has is very special.

“We wanted to provide some hope.

So many families have been devastated

by MND, including Rob’s. While he is

Absolut willing to fight like he is, then we will too. Would I do it again? For the same amount of money – absolutely.”

The MND Association’s Chief Executive, Sally Light said: “We didn’t think Kevin could do more than he already had for people living with MND and the MND Association – but we were wrong. His Extra Mile Challenge has surpassed anything we could ever have expected and I’m not sure we’ll ever be able to thank him enough for his amazing efforts on behalf of the entire MND community.

“It was an absolute honour to cheer him into Leeds Rhinos’ Emerald Headingley Stadium at the end of his incredible 101-mile run, watched by so many people with, and affected by, MND. “Yet again, Kev has demonstrated his determination and passion to help people affected by MND, whatever the personal cost, inspired by his friendship with Rob Burrow, a fellow MND Association patron.”

Crowds of people lined the streets as Kevin embarked on his gruelling journey north and they continued to show support for him as he ran through the day and into the night.

By Kevin’s side throughout was his friend David Spencer and a dedicated

team of cyclists and runners, friends, colleagues and supporters.

Association trustee Vicky Paeschel, whose mum died from MND in 2008, aged just 39, was among those who were invited to ring a bell to mark the start of each leg. Vicky rang the bell at the start of Leg 15 in Rotherham.

She said: “I didn’t know what to expect because it was 10.40pm, so very late in the evening, but there were so many people. They were lining the streets, all wearing MND Association shirts or rugby shirts – it was quite something!

“It was such a privilege to be part of and a really emotional experience for us all.”

At the time of going to press, the total amount raised by The Extra Mile Challenge had exceeded £2.1 million and was still rising. The money will be split between the Association and the Leeds Hospital Charity, which is behind plans to build the Rob Burrow Centre for Motor Neurone Disease.

Decisions about how the Association will spend the money it receives will be taken in the new year in consultation with Kevin and Rob. To donate to The Extra Mile Challenge visit https://www. mndassociation.org/extramile

Kevin with his team during the run and pictured arriving at the Leeds Rhinos Emerald Headingley Stadium at the end of his epic journey

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tely!’

“We wanted to provide some hope. So many families have been devastated by MND, including Rob’s. While he is willing to fight like he is, then we will too.”

www.mndassociation.org

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Benefits law to change in Northern Ireland from March

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ORTHERN Ireland is leading the way in reforming the law on access to benefits for people living with a terminal illness.

At present, to access the Special Rules for Terminal Illness, there needs to be ‘a reasonable expectation of death’ within six months, something which can be very difficult to prove with conditions such as MND.

Thanks to the success of the Scrap 6 Months campaign, which was launched by the MND Association and Marie Curie in 2018, that rule will be extended from six months to 12 months in Northern Ireland, important progress which has been welcomed by the Association. It is hoped the Bill which includes the new definition will be passed into law

by March.

The Association’s Head of Policy and Campaigns, Susie Rabin said: “It’s great to see Stormont really leading the way with this policy change. We will continue to put pressure on Chloe Smith MP, Minister for Disabled People, Health and Work and the Government in Westminster to follow suit and make the changes that they have committed to, as soon as possible.”

Scrap 6 Months campaign scoops three prestigious awards

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HERE was success for the MND Association and our colleagues from Marie Curie at the 2021 Public Relations and Communications Association (PRCA) Public Affairs Awards in November.

Scrap 6 Months, the campaign launched by the Association and Marie Curie in 2018 to fight for changes to the benefits system was named Voluntary Sector Campaign of the Year, and Best Campaign in Northern Ireland at the prestigious event.

The MND Association’s Campaigns team also won the award for Best Public Affairs Team.

The Association’s Head of Policy and Campaigns, Susie Rabin, said: “I am delighted that our Scrap 6 Months campaign has received the recognition of these three awards. It’s an amazing achievement by the team, of which I am very proud - but it wouldn’t have been possible without the determination and support of our campaigners, and those people with MND and their families who have been key to the campaign.

Sadly, so many of them died before we reached this point, and this win is dedicated to them.”

Since the Scrap 6 Months campaign began, more than 75,000 supporters have got involved. In the last year alone,

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Representatives from the MND Association and Marie Curie pictured at the awards ceremony in November

3,200 people have emailed their MP. The campaign has also attracted support from more than 200 cross-party MPs, secured five face-to-face meetings with the Department for Work and Pensions (DWP) and plenty of parliamentary activity.

Thanks to the campaign, the Government has agreed it will change the law so that terminally ill people who have 12 months or less to live can

access benefits more quickly. In July, the DWP announced it would scrap the six-month rule. This means that the majority of people with MND, should be able to access the financial support they need, without delay. The Association is now focusing on ensuring the proposed change is made law as soon as possible so people living with MND can benefit from the changes.

Councillors pledge support for Act to Adapt campaign

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OUNCILLORS from across England have taken part in an event to raise awareness of the Association’s Act to Adapt campaign.

The campaign has been launched to encourage councils across England to improve the support they provide to people living with MND by removing the financial assessment for adaptations that cost less than £5,000. The Association is also urging councils to introduce a fast-track process.

During the online event, councillors spoke to people living with MND who explained why the system urgently needs improving.

Nichola Chippendale, whose husband Simon, is living with MND, spoke about the challenges they’ve faced accessing housing adaptations.

When Nichola approached her local council for support with plans to build a downstairs extension, she was told the earliest time the council could start the work was September 2022. Nichola said: “If Simon can’t get up the stairs, what do we do? We don’t have facilities downstairs. Where is the dignity for a man who has worked hard all his life?”

Nichola and Simon found their own builder who could start straight away, but the council would only pay for some of the build. Nichola said: “If I’d waited over a year and accepted a builder from the council’s list, I would have had the whole grant awarded. Nothing makes sense.”

As a result of the event, a number of councillors have agreed to hold meetings with their colleagues to discuss the issue further.

Nichola Chippendale with her husband Simon

For more information about Act to Adapt and how to get involved, visit our website at: www.mndassociation. org/acttoadapt

Campaigners are pushing for change in Wales

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HE Association has been continuing to push for improvements to the housing adaptations process in Wales following the launch of our Welsh Homes for MND campaign.

To coincide with the publication of the Association’s Welsh Homes for MND report, an event was held for members of the Senedd to learn more about our campaign and how it is currently taking far too long for people living with MND to access housing adaptations.

During the event, people living with MND shared their own personal experiences. Among them was Selina, whose partner died waiting for an adaptation which she felt would have drastically improved his quality of life.

Since then, the Association has met with Julie James MS, Minister for Climate Change, who has responsibility for housing in Wales. The Association was able to present its concerns about the current housing adaptations process and set out the aims of the Welsh Homes for MND campaign. A debate was also scheduled to take place on 1 December.

For more information about the Welsh Homes for MND campaign, and how you can get involved visit www.mndassociation.org/welshhomesMND www.mndassociation.org

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Meet the MND professionals: Physiotherapists A large number of healthcare professionals are involved in the care of someone with MND. In this series, we discover more about the valuable support they provide and how you can make the most of the services offered.

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USCLE weakness, pain and discomfort are common symptoms of MND. Although physiotherapy can’t reverse the effects, it can help people maintain range of movement and comfort for as long as possible.

Physiotherapy helps maintain movement and function through exercise, manual therapy, education and advice.

Physiotherapists can offer advice about with equipment such as head supports for neck weakness and foot splints to help with foot-drop. They can also advise on posture and positioning to maximise comfort. A specialist physiotherapist, known as a respiratory physiotherapist, can provide guidance on breathing and techniques to help people clear their chest and cough more effectively.

Many physiotherapists may only come across a few people with MND during their career, unless they specialise in MND or work in palliative care, neurology or a respiratory team.

It is important that people seek individual advice from a physiotherapist with experience of MND, or other long-term neurological conditions to ensure the treatment is appropriate – too much or the wrong type of exercise could cause fatigue and injury.

Accessing support The NICE guideline on the assessment and management of motor neurone disease recommends that a physiotherapist

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should be a core member of the MND care team. Ask any member of your care team to refer you if this is not the case. Referrals will usually be directed to the relevant area of physiotherapy, for example to a neuro physiotherapist, respiratory physiotherapist or domiciliary physiotherapist.

Appointments take place in a hospital, GP surgery, a health centre or a local hospice. Some physiotherapists will visit people at home if travel is difficult.

Further information We have a number of related resources you may find useful: • Information sheet 6A – Physiotherapy • Information sheet 6C – Managing pain • Information sheet 11C – Equipment and wheelchairs • Information sheet 11E – Environmental controls We also have further information for professionals: • Information sheet P1 – Head supports • Information sheet P2 – Wheelchairs for MND • Information sheet P11 – Pain in MND Download from www.mndassociation.org/publications or contact MND Connect to order hard copies.

Call 0808 802 6262 or email mndconnect@mndassociation.org

Support for MND healthcare professionals E NSURING professionals have the information and support they need to improve the care they offer to people living with MND is among the Association’s highest priorities.

In 2021, 25 education events took place online, attended by more than 2,000 health and social care professionals.

A team of experts joined the Association for 12 webinars, covering a range of topics including hospice care, familial MND and end of life. Six virtual masterclasses were held with 187 professionals taking part, allowing delegates to delve deeper into a specific aspects of MND care. Two care centre study days for the South Wales and South East Networks were attended by 109 people.

In March 2021, the Association launched its new Community of Practice, a peer-led group of health and social care professionals encouraging and supporting the development of good care for people living with, or affected by, MND. It currently has more than 750 members. During the year, we delivered four dedicated Information and Knowledge

Exchange events featuring presentations and networking opportunities, which attracted 324 professionals. We have also developed a dedicated area on our website with shared resources and presentations, and a dedicated Facebook page which has 100 members.

Find out more about the Community of Practice at www.mndassociation.org/cop.

You can also catch up with our webinars at www.mndassociation. org/webinars

Prestigious lecture focusses on end of life care

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HE importance of high-quality end of life care was the subject of the prestigious Annual Stephen Hawking Foundation MND Lecture held in November.

Organised in partnership with the Royal College of Nursing and supported by the Stephen Hawking Foundation, the lecture was held online and 1,300 professionals registered to take part.

Led by Dr Idris Baker, Consultant in Palliative Care at Ty Olwen Hospice in Swansea and National Clinical Lead for Palliative and End of Life Care in Wales, the lecture explored the importance and delivery of high quality, person-centred, end of life care for people living with MND. It focused on the relevant NICE recommendations, how these can be applied and examples of good practice.

The MND Association is grateful for the financial support received from the Stephen Hawking Foundation to make Lucy Hawking this annual event possible.

Dr Idris Baker

www.mndassociation.org

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Lindsey serves up a fundraising challenge

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PEECH and language therapist Lindsey McKeever decided to raise money for the MND Association by challenging herself to eat a texture modified diet for 20 days.

Lindsey, pictured, an NHS community speech and language therapist with the Oxford NHS Foundation Trust, said she decided to swap her usual diet for pureed foods after being inspired by people living with MND who often face the same challenge.

She said: “Eating and drinking have so many positive connotations. When swallowing becomes more difficult and choices become reduced because of safety concerns. This has a huge impact on the person living with MND, and their family and friends.

“I experienced in a small way, and for a limited time, some of the challenges a person living with MND faces in order

to swallow safely and still enjoy food and drink. I experienced reduced food and drink choices, loss of appetite and decreased interest in food. I found that food preparation took longer, and I needed to plan more carefully to eat a balanced diet and to eat enough. I experienced weight loss and changes in bowel habits. I got tired more quickly, did not concentrate as well and got bored with my safe foods. I particularly missed varying food textures within a meal.”

Lindsey said that she found inspiration from the Association’s guide Eating and drinking with motor neurone disease.

She said: “The guide was a great resource. Favourites included the fish pie, pumpkin soup and Irish Cream bread and butter pudding!”

To download the guide visit www.mndassociation.org/eating

Care information update Getting around Our new booklet bringing together all our content on driving, travel and holidays, in one simple resource. You can read more about the booklet on pages 18 and 19. For more information visit: www.mndassociation.org/mobility Making the most of life with MND Our booklet on ways to maintain your interests and hobbies has been updated.

Find this resource and more at: www.mndassociation.org/emotions Information sheet 1B – Health information in other languages and formats This updated information sheet can help if you need information in other languages or a different format at health or social care appointments.

Information sheet 10C – Disabled Facilities Grants and home accessibility Our sheet on grants to help with home adaptation. This updated resource now includes extra prompts on what to think about to make your environment more accessible.

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Information sheet 1C – Finding the information you need This information sheet has been revised and now includes our new Care information finder search facility (see below).

Information sheet 8C – Withdrawal of ventilation for MND We have revised this sensitive content to ensure it remains up to date. It explains what to expect if you use assisted ventilation and decide to withdraw this support.

Care information finder A quick reminder about our new search feature on our website. It’s designed to help you find information by need. See the Care information finder at www.mndassociation.org/careinfofinder Updated resources for health and social care professionals: These may be useful to share with the professionals who support you: · Caring for a person with MND: A guide for care workers · Cognitive change, frontotemporal dementia and MND

· Multidisciplinary team working for MND See all of our resources 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. If you would like to get involved, you will have opportunities to feed into a range of different content and formats.

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

David’s work takes centre stage at prestigious exhibition

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N EXHIBITION of some of the world’s most dynamic contemporary artists took place in November featuring the work of photographer David Hicks.

David, who was diagnosed with MND in May 2021, was one of 50 artists taking part in the 24-day FLUX Exhibition in London.

David explained that he had worked as a chef and a publisher of greetings cards, stationery and gifts before his love of travel and photography took over.

He said: “I am influenced by the simple things. I love people, of course, and have often chatted to folk abroad.

I like seeing how they live and their immediate surroundings. I find all this interesting. Anything that’s been touched by the human race - signs, walls, adverts. I’m not travelling now, but I’m processing my backlog like mad, so my girlfriend can launch new galleries when I’m gone. I’m photographing new ideas as I have them, but at home.

“I print on different substrates.

Examples include greenhouse glass, rear view mirrors from cars, wooden artist palettes and coffee tables. Putting these together takes a while. Getting the relevant images on the right substrates requires a lot of research, which I’ve got time to do!”

David was diagnosed with MND after experiencing difficulties with his speech.

He said: “I first noticed my voice going gravelly and then slowly mispronouncing words. That’s when I got checked out. I was diagnosed in May, and since travelling is still tricky, have stayed living on my boat in Wandsworth…for now! I am slowly getting stiffer in my legs and finding it harder to speak. No doubt I won’t travel again, but I bought a campervan in summer to enjoy the UK.” For more information about David’s work visit his website at www.hixposure.co.uk

Photographer, David Hicks, who is living with MND and some examples of his work

www.mndassociation.org

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‘Their kindness lives on in the work we do every day’ The MND Association is always enormously grateful for the generous donations we receive each year from those who remember us in their Wills. Here, MND Care Co-ordinator Katherine Smith and her colleague Vicky Lester, explain how a legacy has helped to fund their work supporting people living with MND in East Sussex.

“M

Y colleague Vicky Lester and I are MND Care Co-ordinators in the East Sussex area. Our posts were created by the Association in November 2019 and are funded by a legacy left by someone in their Will. The legacy money funds our posts for three years and after this our local NHS trust will continue the funding.

“Vicky and I are incredibly grateful to the person who left a legacy to fund our posts. Without this money our roles would not exist. When we think about it and reflect upon our work, it is incredibly humbling and touching to think that, even at their most vulnerable, someone took the time and effort to help improve the lives of people living with MND. To us, this person’s kindness lives on in the work we do daily.

“Vicky and I have been incredibly grateful and thankful to the MND Association and our local branch, for the on-going support we have received. The person who left this legacy has made a huge impact on the lives of people with MND in East Sussex.”

“When we started our new roles we were able to see immediately the difference they made – supporting people and their families right from diagnosis, ensuring timely support and interventions.

“People living with MND and those supporting loved ones with MND will understand better than anyone how overwhelming being diagnosed with MND can be. It is difficult to know who to contact when help and support is needed. The biggest impact has been bridging the gap between the person living with MND and accessing the support they need. Vicky and I

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Katherine Smith and Vicky Lester

are privileged to be able to provide consistency and continuity of care. We both really enjoy our roles, and it is our privilege to get to know our patients and their families well.

“As we enter our third year, Vicky and I want to continue to build, and improve upon, the pathways we have created and the support we provide. Our hope for the future is that everyone in East Sussex will have access to an MND Co-ordinator from diagnosis. We would also like to develop a bereavement care programme for families and carers.

“Vicky and I have been incredibly grateful and thankful to the MND Association and our local branch, for the on-going support we have received. The person who left this legacy has made a huge impact on the lives of people with MND in East Sussex and enriched our lives by giving us this opportunity.

“We hope the person’s family and loved ones know what an amazing legacy this person has left behind.”

You can find out more information about legacies by visiting www.mndassociation.org/leaveagift

Sharing messages of love and hope at Christmas

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CHRISTMAS tree filled with messages of love and hope helped to bring comfort to many during the festive period.

John Adams, who is living with MND, set up a Christmas tree in his garden for people to visit and write a message on a bauble honouring people living with MND or remembering loved ones who have died.

He said: “I was diagnosed with MND more than four and a half years ago and, at the time, I was told my life expectancy would be 12 to 18 months which came as a total shock. It took me a couple of weeks to digest my prognosis, but I soon realised I was going to stay positive. I treasure every good day I have. I love my family and friends and I keep fighting for them after all, my granddaughter has asked me to give her away at her wedding!

“I would like to think a cure for MND will be found in the future. I told my carer that I wanted to do something to help. I am limited in what I can do,

John Adams, who is living with MND

andwe came up with the idea of making Christmas gift tags. My daughter set up a JustGiving page and we set a target of £300. The response was overwhelming – in no time at all we hit £1,000! I could not believe the messages I received from fellow MND warriors, carers and

people who had lost loved ones to this horrendous disease.

“I also got lots of support and encouragement from people in my town. I knew then I had to keep fighting to promote and raise awareness of MND. A company donated a lovely Christmas tree for my front garden, and I decided to call it The Tree of Love and Hope. I invited people to come along and write on a bauble for a loved one I now have more than 200 baubles proudly displaying the names of MND warriors and MND angels. Some of the messages have made me cry, but I reply to every single one and send love and encouragement. My challenge goes on and I will keep going as long as I can. I have had messages from all over the world - we are all in it together and must encourage each other to keep fighting.”

At the time of going to press, John has raised more than £9,000. If you would like to donate, visit https://justgiving. com/fundraising/John-adams44.

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Former teammates unite to honour Martin

Martin pictured with his former teammates at the end of the walk

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AST summer, for the first time in more than four decades, members of the 1976 John Port School basketball team walked together arm in arm through the gates of their former school.

The team had just completed a 60mile walking challenge in honour of their former captain Martin Kelly who was diagnosed with MND in 2017.

They were welcomed back through the school gates by friends, family and supporters.

“As well as the money raised, I feel we have also increased awareness of MND through all the many people we have been in touch with.”

The journey took them from Martin’s home in Sheffield, through the Peak District before returning to the school where they had played basketball together in the 1970s. The team was also joined virtually by two team members completing equivalent walks

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in Germany and the USA after Covid travel restrictions meant they could not complete the reunion walk in person.

Martin said: “The whole venture has been an amazing success; £34,000 raised for the MND Association from 500 donors, across 11 countries. As well as the money raised, I feel we have also increased awareness of MND through all the many people we have been in touch with.”

Martin’s friend, Peter Mills, who organised the walk, said: “The five days have been a fantastic experience because, aside from all the walking and fundraising, we met so many people who supported us, cheered us on and wanted to donate. From the 50 or so friends and supporters who joined us for the first two miles of the walk with Martin, to the welcome at our school, there has been enhanced awareness of MND, just how cruel it is and the pressing need to find a cure.”

To donate, visit https://www.justgiving. com/team/JPS1976basketballteam.

Martin playing basketball in the 1970s

Former footballer kicks off fundraising ball F

ORMER footballer Len Johnrose, who was diagnosed with MND in 2017, hosted a masquerade ball in September to help raise money for the MND Association, the Len Johnrose Trust and the Association’s Central and East Lancashire Support Group.

“It was a great night, and a privilege to be surrounded by so many family and friends who gave up their time to help me raise money and awareness.”

Len, who played for a number of teams throughout his career, including Burnley, Bury and Hartlepool, had been planning the event since 2019 with the support of his wife Nadine and children, the Association’s Regional Team and a committee of dedicated volunteers and supporters including Jan Hindle, Emma Yates, Sylvia Hinde, Karen Smythe and Sue Muller.

The stunning Empress Ballroom at Blackpool’s Winter Gardens was the venue for the event, which raised almost £30,000.

Len said: “It was a great night, and a privilege to be surrounded by so many family and friends who gave up their time to help me raise money and awareness. Thank you to the Highgate String Quartet and all the sponsors and donors who made the event a success,

especially Blackpool Winter Gardens and Austin Wilkinson from AW Demolition in Manchester.”

After speeches by Sue Muller from the MND Association and Wendy Bennett from the Lancashire and South Cumbria Care and Research Centre, 280 guests enjoyed a drinks reception and three course meal, a live auction, and dancing and entertainment from performers

including ITV’s Britain’s Got Talent 2011 winner Jai McDowall and Dave Finnegan’s Commitments.

Special guests included Coronation Street vicar Daniel Brocklebank, former footballer George Melling, who is also living with MND, Oscar-winning Wallace and Gromit animator Nick Park CBE and University of Sheffield consultant neurologist Professor Dame Pamela Shaw.

Professor Dame Pamela Shaw, Len Johnrose and Daniel Brocklebank

Nick Park CBE and his wife Mags pose in front of a flower wall by Amanda Jane Bespoke Designs in Preston

The Empress Ballroom in the Blackpool Winter Gardens

Len and his family

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Add your voice to our new network groups

Ahmed Abdeldayem

Priyanka Pandey

Zaynah Yaqoob

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group and the Lesbian Gay Bisexual, Trans, Questioning/Queer, Intersex and Asexual (LGBTQIA+) group.

The purpose of the groups is to help ensure that people from every community who are part of the Association feel safe, supported and comfortable, have a voice and are able to make a difference.

Ahmed Abdeldayem chairs the

LGBTQIA+ group, while Priyanka Pandey and Zaynah Yaqoob are joint chairs of the BAME group.

The groups meet regularly via Teams or Zoom and welcome new members.

If you would like to join either group, attend their next meeting or just find out more please contact BAME@ mndassociation.org or LGBTQIA@ mndassociation.org

OULD you like to add your voice to one of the Association’s new network

groups?

As part of our commitment to Diversity, Equity and Inclusion, the Association has created two new network groups for people living with MND, volunteers and staff. The Black, Asian and Minority Ethnic (BAME)

Colleagues pay tribute to much-loved ‘pioneer’

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RIBUTES have been paid to Dr Andy Fowell, a former MND Association trustee, who helped to establish the North Wales MND Service.

Dr Fowell, a retired palliative care consultant, died in an accident on 25 September. He was married to Anne and had two children, Rachel and Richard.

His colleagues at the Betsi Cadawaladr University Health Board (BCUHB) said: “Dr Fowell was one of the first palliative care consultants in Wales and the first in North Wales. He was instrumental in establishing the palliative care service for Alaw Ward in Ysbyty Gwynedd, the hospital Specialist Palliative Care Team and for leading the community team. He helped to improve the care of patients in all settings at the end of life.

“He was well-known throughout the all-Wales Palliative Care community through his chairmanship of the Gregynog Palliative Care Conference, and teaching postgraduate degree courses. He was also a pioneer in the

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Dr Andy Fowell

development of the Welsh guidance to support professionals providing care at the end of life and developed training posts across North Wales.

“He was pivotal in the development

of the All-Wales Strategy on Palliative Care that resulted in the development of fair access to services across Wales with a recognition that 24/7 support to patients and families is essential.

He was instrumental in developing Advance Care Planning on an all-Wales basis, working to ensure the patient voice was heard.

“Along with his professional achievements, Dr Fowell will always be remembered for his kindness, his friendship and sense of fun. He was a dear friend to many, mentor to many and will be missed very much.”

In March 2019, Dr Fowell was among the cyclists who took part in a mammoth eight-week cycle challenge from Asia to Anglesey to raise money for the MND Association and St David’s Hospice in Llandudno. The challenge raised an incredible £25,000.

Dr Fowell was elected to the Association’s Board of Trustees in 2013 and served until July 2016.

Making it easier to find the right wheelchair for you

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NDERSTANDING how to access wheelchair services can be difficult, but the MND Association is always here to help.

Our Care Improvement Co-ordinator, Anne Buchanan, is available to assist with queries and can signpost people living with MND to their local wheelchair service. She also supports people living with MND throughout the process and

Anne Buchanan

can help if there are issues that need to be addressed around waiting times.

Anne explained: “I can help with enquiries about financial support, purchasing wheelchairs or renting them. We can also offer clinical support through our wheelchair therapists. I also offer support to professionals who are using the MND Wheelchair Services Pathway which makes it easier for people living with MND to get the wheelchair they need when they need it.”

The Wheelchair Services Pathway is a guideline which health and social

care professionals are advised to follow when it comes to providing the right wheelchair. The pathway was revised in 2021 and now covers the introduction of the NICE guideline. It also includes an audit tool to monitor processes and identify and address any potential difficulties.

For more information about wheelchairs, contact Anne Buchanan on 01604 611694 or wheelchairqueries@mndassociation. org. You can also get in touch via MND Connect on 0808 802 6262.

Record breakers share their story at fundraising event

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HEY cycled around the world raising money for the MND Association and Oxfam in 2020 and in October 2021 Catherine Dixon and Rachael Marsden shared their amazing story with members of the Chiltern Branch.

Catherine and Rachael – also known as TandemWoW – were the guest speakers at the branch’s fundraising evening at Beaconsfield Golf Club where they explained more about their epic challenge which saw them cover 18,263 miles in a record 263 days. As a result of their efforts, Catherine and Rachael became the fastest people to circumnavigate the globe on a tandem, and raised £37,000 for the Association and Oxfam.

The evening raised £9,000 for the branch’s funds.

Catherine Dixon and Rachael Marsden pictured at the event

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Sisters honour their dad with epic Welsh adventure

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WO sisters have taken part in an epic cycle ride to celebrate the life of their dad, Bob, and mark the first anniversary of his death from MND. Nathalie Dawson and Melissa Cooper decided to cycle from their dad’s home in Staffordshire to The Lonely Tree on the banks of Llyn Padarn in Snowdonia, where Bob’s ashes were scattered following his death in July 2020. The sisters also took the opportunity to to raise money for the Association in Bob’s memory.

Nathalie said: “In June 2020 I did a month-long cycling challenge covering more than 1,000 miles and Melissa joined me for my birthday bikes ride. Dad loved seeing us together on our bikes, so much so that he insisted we buy ourselves decent bike and keep on riding together. Sadly, only 26 days after I completed the bike ride Dad died. It has been a very difficult first year adjusting to life without him. The first anniversary was always going to be tough, but Melissa came up with this incredible idea to turn a negative into a positive and commemorate his wonderful life.”

Melissa explained: “I have struggled a lot over the past 12 months coming to terms with losing Dad. I have thrown myself into my fitness and really worked hard on building my physical strength, but now I need to focus on my mental strength.

“It felt right to set a challenge with our ‘Bobster’ bikes. I called Nathalie and told her about my idea to cycle to Dad – and back! Of course, she accepted the invitation to join me. He loved nothing more than seeing his two girls together.”

So far, the sisters’ challenge has raised more than £2,800 and the family’s Tribute Fund has almost topped £20,000. To donate

Sisters Nathalie Dawson and Melissa Cooper pictured at The Lonely Tree on the banks of Llyn Padarn

visit www.justgiving.com/fundraising/bobsterswelshadventure The MND Association has a range of information for anyone who is coping with bereavement at www.mndassociation.org/ bereavement. You can also listen to our MND Matters podcast at www.mndassociation.org/podcast.

For more information about setting up your own Fightback or Tribute Fund visit www.mndassociation.org/ fundraising.

A decade of care for people affected by MND

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DECADE of caring for people living with and affected by MND was marked by the Association’s Nottinghamshire Branch in October.

Thursday 14 October saw the tenth anniversary of the inaugural meeting of the Second Thursday Group which was founded by branch members Godfrey Kent and Roger Spells. The occasion was marked with a visit from the Association’s Chief Executive, Sally Light.

Godfrey explained: “Organising a support group from scratch is a bit like being on The Great British Bake Off. There are lots of different ingredients for a successful outcome and as ever, timing is key. Finding a suitable location is paramount. Eventually we found a very

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Members of the Nottinghamshire Branch mark the 10th anniversary of the Second Thursday Group alongside Association Chief Executive, Sally Light

suitable place that is almost in the centre of the county.

“We rented the main hall from the local sports and social club. It has an excellent car park, big enough to take the larger vehicles that would accommodate the transportation of wheelchairs. Throw in an ample number of committed

volunteers and we were all set to begin our journey – a journey which on that first day we could never imagine would touch, change and enhance the lives of so many people over the next ten years.”

During her visit, Sally updated members on the progress the Association is making and reflected on an exceptional year.

She also congratulated the group on its achievements and the work it does to support people living with and affected

by MND across Nottinghamshire.

For more information about the Nottinghamshire Branch visit www.mndassociation.org/ nottinghamshire or follow @MNDNotts on Twitter

Fundraisers reunite at Walk to d’feet

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EMBERS of the Coventry and Warwickshire Group were reunited for the first time since 2019 at their Walk to d’feet in September.

Ryton Pools Country Park near Coventry was the venue for the event, which saw 60 people enjoy a fundraising walk in the early autumn sunshine.

Two inflatable dinosaurs called Madge and Nellie accompanied the walkers while Tesco provided water and refreshments.

Group leader, Sam Tooze, who is living with MND pictured with inflatable dinosaurs Madge and Nellie

Members of the Coventry and Warwickshire Group pictured during the walk

Association branch receives a grand donation

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HE Association’s East Surrey Branch has received a generous £1,000 donation from Simon Ferrar, founder of Clandon Wood Nature Reserve and Natural Burial Ground.

The donation was made after Clandon Wood won the award for best natural burial ground for the third year running at this year’s Cemetery of the Year Awards. As part of the award, Mr Ferrar was able to donate £1,000 to the charity of his choice.

Branch Chair, Simon Edmands, said: “Our branch relies entirely upon voluntary support to fund and run its services, so this money will go a long way towards helping us continue to provide vital care and support to local people living with MND.”

Simon Ferrar, founder of Clandon Wood Nature Reserve and Natural Burial Ground, pictured right, hands over the £1,000 donation to Simon Edmands, Chair of the East Surrey Branch

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Thank you

Share your pictures at www.facebook.com/mndassociation If you are sending in photographs to feature on these pages please ensure you have full permission to use the images.

£5,000

Pedal power!: Paul Westwood decided to support the Association by cycling 100 miles to honour his cousin Chris, who is living with MND. He originally planned to raise £1,000, but soon smashed his target and set himself a new challenge of raising £2,675. Paul also said that if he could beat the £1,000 and his previous personal best time, he would double the money himself. With a new personal best of 6hrs 8mins, three minutes quicker than his previous best, he soon raised more than £5,000.

£7,000

Fundraisers take their cue from Nigel: Nigel Brasier was delighted to be back fundraising again at the Spalding Constitution Club in October after being forced to cancel his annual snooker tournament in 2020 due to Covid. He said: “The atmosphere at the club was electric all afternoon and evening. I’ve never known anything like it and the generosity from people was amazing. We’ve raised £1,860 so far which is fantastic.”

£1,860

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With a little help from my friends: When Covid restrictions stopped Paul Moran, and his friends James Gorrie and Jonathan Drake, from taking part in a planned cycle ride from Paris to Blackpool they weren’t put off. Instead, they decided to cycle the same distance from Weymouth to Blackpool and raised more than £7,000. Paul said: “Getting on my bike and having the fresh air on me gives me a chance to gather my thoughts, reflect on things and gives me focus. Mum fought this disease for less than five months before she died at home in October with her family around her. Watching her suffer, especially in her latter weeks was so very tough, but we will never forget her ability to makes us smile, even at difficult times, and how strong she was throughout. The more we can do to raise awareness and funds to potentially find a cure for this disease is so important.”

The wind beneath our wings: Adrian’s Dream Team completed the South Coast Ultra Challenge, raising more than £7,000 in memory of their friend and husband Adrian, pictured, who died in October 2021. Team captain Emma said: “The funds we have raised will make a difference in helping researchers find a cure for this horrific and cruel disease. I hope it will put more information in the public domain so we can find a cure which has robbed us of the lovely charismatic, charming man who is also my dear friend Adrian.” Before Adrian died, he received an MND Association grant which enabled him to realise his dream of flying in a Spitfire.

Wheels and walkies!: The East and West Surrey Branches of the Association hosted a Wheels and Walkies event at Denbies Wine Estate in Dorking in October. More than 100 people took part in the event, which is the brainchild of 48-year-old, Carlos Lopez Lansdowne, who was diagnosed with MND in December 2019. He regularly takes his own dog, Cooper, for a walk around the estate using his powered wheelchair.

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£7,000

£4,420

£10,700 Friends united: Rachel Bush, together with her dog, Ruby, completed her walk along the 630-mile South West Coast Path on 30 October. Along the way she encouraged her family, friends and neighbours to join her at various stages and helped raise more than £10,700 for people affected by MND.

Thank you Making a difference with every step: Kevin Woollan and Dennis Jones took part in the Around the Bays in 60 Days challenge. They walked 630 miles in just 51 days and raised £13,968 in honour of their friend Russ Scott, who sadly died from MND during the challenge.

£13,968

£1,400

In memory of Bill: Liz completed her seventh fundraiser for the Association this year, cycling the Way of the Roses – a 180-mile coast to coast route from Morecambe to Bridlington.

Her brother, Bill, died five years ago after being diagnosed with MND in 2015 and she promised him that she would complete a cycle ride every year to fundraise.

This latest Bike4Bill challenge raised £1,400.

£20,000 ‘Remembering Dad’: David Beesley has been raising funds for the North and West Cumbria Branch of the MND Association in memory of his dad, Howard. He said: “My dad, a hairdresser from Carlisle, died in December 1991.

Back then, the nearest branch was 70 miles away, so his partner Morag and local healthcare professionals set up an MND Association branch locally. In 1994, I decided to bring friends and family together to raise funds for the branch by organising Shake on the Lake parties and it was such a success we’ve just had our 20th event!” With 130 guests each time, the event has raised £20,000 in total.

£920.50 Aiming high: 21-year-old Eleanor Raikes and her team-mates from Leeds University Medical School held a charity netball tournament and raised £920.50 for people affected by MND.

£25,000

Dan’s going the extra mile: Dan Hayes, who has supported the Association for many years, has raised more than £25,000. Recently, he has taken part in the London Marathon wearing a customised Leeds Rhinos kit. He also raffled a Leeds Rhinos strip which had been worn by Rob Burrow and signed by the squad after Rob’s last match.

Stephanie’s special 10k: Stephanie Miller had been planning to run The Warrington Way ultramarathon in 2020 when Covid put paid to her plans. Still determined to fundraise in support of her father who was diagnosed with MND in January 2018, Stephanie set herself a challenge of running 10k every day in 2021. Stephanie completed her last 10k on New Year’s Eve – so far she has raised £7,400.

£7,400

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Members letters If you have something you would like to share with other members of the MND community, we would love to hear from you.

Letters, which must include your full address, can be sent via email to editor@mndassociation.org or posted to Your letters, Thumb Print, Francis Crick House, 6 Summerhouse Road, Moulton Park, Northampton, NN3 6BJ Please note that letters may be edited. If you are including photographs please ensure you have full permission before sending.

‘We’re looking forward with positivity’

P

LS. What is that everybody asks?

Primary Lateral Sclerosis is a very rare form of MND – so now when people ask, I say I have MND and if they are interested I tell them about PLS! I first had trouble with my speech in 2012. I had words in my head, but I couldn’t say them coherently so after being referred to a consultant, I was diagnosed with dysarthria. I was a national sales manager at the time and, with help from a speech therapist, I survived in that role for two more years.

I avoided speaking too much and set myself up as a self-employed delivery driver. I started delivering for Yodel in Flackwell Heath, Bourne End and Cookham. Being an avid sports person, I was still playing golf competitively, riding my bike, working out in my home gym, and walking with my wife and dog.

This would soon change.

I became captain of the golf club.

Everybody was aware of my speech

Ian Lev, pictured with his wife, Beverley.

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so that helped. That’s when I started to have a few mishaps, tripping over, losing my balance but I thought nothing of it until I collapsed a couple of times. I went to see my GP and was referred to a heart consultant and neurologist and I was told to stop driving immediately. After several meetings and tests, I was diagnosed with PLS. The devastation on hearing the letters MND. By the time I was diagnosed, I had lost some body strength and while I could still walk, my balance and reactions were severely affected. I felt a lot more tired and still couldn’t drive, so things had to change. I could still think as my brain was still very active, albeit work was out the question. We had to look forward.

At the same time, my wife’s mum had been diagnosed with cancer and had been staying with us for a few months while having her treatment. We decided

to move with her to North Devon, but she sadly died before we got the keys to the house. By this time the strength in my arms had got worse, I couldn’t lift anything heavy, I was struggling to get in and out of the car and was walking with a slow wide gait, but I could still manage climbing the stairs.

We bought a mobility scooter, a manual wheelchair and a riser recliner. Grab rails and handrails soon appeared. I enjoyed sessions with a neuro-physiotherapist.

I knew it helped my body and enabled me to maintain my positivity.

I was finding it harder to get around, so we started to discuss a wheelchairfriendly environment or perhaps looking for a house that offered the same.

We quickly concluded that it would be more cost-effective to build an extension on the ground floor, including a living space, bedroom, dining room, downstairs toilet and wetroom.

Throughout, I have been supported by my wife and daughters. We are close, which has come to the forefront of my life over the last eight years and hopefully will continue, especially as I can do less and less for myself. My wife, Beverley, does everything for me without complaining. I am eternally grateful.

I listen to music, I collect vinyl, watch TV and I am now a volunteer campaigner for the MND Association which I enjoy. I also write and enjoy eating and drinking, although I can no longer cook.

We have lots of lovely friends who are all very supportive too. Thanks to Zoom and Facetime we can still meet virtually.

I have PLS, but I am pretty stable at the moment. It will probably be with me for the rest of my life unless a cure is found.

I can look back with enjoyment, but I definitely look forward with positivity.

We enjoy our life as best we can.

Ian Lev

About us

‘I’m learning to live with MND’ I

N 2018, I was diagnosed with MND. It all started in August when I noticed fasciculations (twitching) and problems with my speech. I ignored this for a short time, and then saw my GP who immediately referred me to neurology. I was diagnosed on 20 September. Having spoken to my GP, and others, I was expecting it. I wasn’t stressed or upset, as I have always believed that things happen for a reason, and I was so grateful to have had a healthy happy life travelling around the world.

I soon had all the necessary people on board from the Cardiff and Vale Health Board, such as neurologists, a speech and language therapist and a dietician.

I also attend Cardiff City Hospice where I am overwhelmingly supported by my consultant, his secretary, a social worker, welfare rights officer and counsellor. I also have a physiotherapist and occupational therapist.

MND is certainly life-changing and losing my speech has been the most challenging symptom. I used to love singing and karaoke. I have adapted to the changes and will continue to do so.

Without my dogs I would not be the same.

Last summer, I started thinking about my mum, auntie and nanny and the fact they had all died from frontotemporal dementia. Due to this also being a neurological disease, I wondered if there were connections, and spoke to my neurologist. We discussed genetics, and by this time I was convinced I had inherited MND. My neurologist referred

The Motor Neurone Disease (MND) Association We improve care and support for people with MND, their families and carers, and fund and promote research that leads to new understanding and treatments.

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

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

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

mndassociation mndassoc mndassoc

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

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

0808 802 6262 mndconnect@mndassociation.org me for genetic counselling, and I was seen by them in October last year. They confirmed what I had thought all along.

Relief! I was expecting this, and I was so pleased to know the cause, despite the future potential for dementia as well. I have accepted and come to terms with my diagnosis, and I consider myself extremely fortunate to be where I am right now.

Simon Wales

Join in the conversation Our online Forum is an ideal resource for anyone living with or affected by MND. Anyone can access the forum to read content, but you must register if you’d like to ask a question or comment.

https://forum.mndassociation.org

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

Call 01604 611860 or email membership@ mndassociation.org

Get involved Telephone: 01604 250505 Email: enquiries@ mndassociation.org www.mndassociation.org

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