Thumb Print - Autumn 2020

The magazine of the Motor Neurone Disease Association

Autumn 2020

A new chapter begins for Beverley Author celebrates the launch of new children’s book

Fo or MND

GAZE COMPATIBLE

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, part of the

family

4-5 Emergency funding to help people living with MND in Wales Association receives support from the Welsh Government

6-7 Fundraising ideas by the sackload!

How you can help support the Association’s work this Christmas

8-9 Clinical trials – the next steps An update on the Association’s involvement in ground-breaking research

10 We’re bringing the world together for our online Symposium How we’re making sure researchers and clinicians stay connected

14-15 Mission 5000: Accomplished!

How our fundraisers have helped raise money during the pandemic

36-37 Your voice Thumb Print readers share their stories

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.

On the cover: Beverley Fairbanks is pictured with her husband David and their dog, Truffle. You can read her story on pages 18 and 19. Picture courtesy of Photography by Tanya.

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.

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 2020.

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

welcome…

Over the past six months the whole MND community has faced great challenges, the like of which we have never seen before.

Right from the start of the pandemic our priority was clear – to provide people living with MND and their families with advice and reassurance; a trusted source of information that was both clear and concise as well as practical on-going support.

Within days, our volunteers were in contact with people living with MND right across the three nations, providing reassurance that the Association was there for them and able to provide help and support when it was needed most.

We worked closely with leading experts to cut through the confusion and create information tailored to the needs of people living with MND. With support from the My Name’5 Doddie Foundation we were also able to offer Emergency Support Grants to help with unexpected costs.

Our branches and groups kept people living with MND connected through virtual support groups and meetings, and our fundraisers responded to the challenges they faced with ingenuity and boundless energy – ensuring that virtual events such as the 2.6 Challenge, Run 21 and Mission 5000 were a huge success.

However you have supported the Association over the past six months – whether you are a volunteer who took the time to contact someone living with MND, whether you continued raised during lockdown, or whether you have campaigned to make sure the voices of people living with MND are heard – thank you, we really couldn’t be more grateful for your support.

As we face the new year we will be relying on this goodwill and generosity more than ever as we work hard to ensure the legacy we take forward from the pandemic is a positive one.

We want to maximise the opportunities we now have, harness our growing impatience and be bolder in the ambitious research projects we fund to ensure our vision of a world free from MND becomes a reality.

But we can only do all that with your support.

As Christmas approaches, I would encourage you all to take a moment to get involved with our Christmas Appeal. By standing together, we can make sure that people living with MND and their families continue to have the support they need, whenever they need it.

You’ll find more information at www.mndassociation.org/christmas Thank yyou.

Sally Light Chief Executive

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People with MND in Wales to benefit from emergency funding EOPLE who are living with MND in Wales are set to benefit from emergency funding which has been awarded to the Association by the Welsh Government with support from the Wales Council for Voluntary Action (WCVA).

As part of the measures it has put in place to support the voluntary sector during the pandemic, the Welsh Government and WCVA have awarded £46,352 to the Association to help it support the costs of its staff and volunteer team in Wales over the next six months. The funding will enable the Association to run a series of virtual events across Wales, including regular support groups and informal gatherings for people living with MND, their families and carers and recruit and train more volunteers to ensure the Association can support more people living with MND from diverse communities across Wales.

News of the award comes at a challenging time for the Association as it continues to face losses in fundraising income as a result of the coronavirus crisis.

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The Association’s Director of Fundraising, Linda Allen said: “This award will help us to continue providing our services for people with MND in Wales into the future. It is the only emergency government funding that we’ve been able to access to date, so we are particularly grateful to the Welsh Government for understanding the value of the voluntary sector and responding so quickly to the crisis.”

Catherine Miller, Head of Grants and Environment for the WCVA, said: “We are very happy that through the Voluntary Services Emergency Fund (VSEF) we have been able to provide a grant to the MND Association which is delivering vital services to those living with MND in Wales. The VSEF grant has contributed to enabling the Association to adapt and continue to deliver services throughout the pandemic when service users and carers are experiencing new needs.

We are especially proud that this grant has contributed to the development of new ways of doing things to ensure continuity of service provision in times such as this pandemic.”

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other carers as well as receive support yourself if you need it. As a carer I feel I am not forgotten.”

People living with MND are also staying connected thanks to the support of volunteer Association visitors. They keep in touch through regular calls and emails, helping to ensure that people living with MND are never alone.

Lynwen Griffith has been an Association Visitor (AV) for three years. Throughout lockdown she continued with her AV duties supporting four people who she contacts every couple of weeks.

She said: “I chat to the person who is living with MND or the carer depending on who answers the phone. I hope it helps them to know they’ve got someone at the end of the phone.

We don’t always discuss things about MND. It’s mainly a friendly chat and offers emotional support.

“I became an AV as I was looking after someone with MND in my role as Community Nurse and was looking for some support for them. There weren’t any AVs at the time in the area and no Welsh speaking ones either so the Association asked me if I would like to volunteer as one and that’s how it started. If I can help anyone, it’s worth it. It’s a very positive role and it’s very rewarding.”

If you are interested in becoming a volunteer, please contact one of our Area Support Coordinators for an informal chat and to find out more about the opportunities available. Please call Carol Smith, Area Support Coordinator for South Wales and South Powys on 01604 800615 or Jo Cunnah for North Wales and North Powys on 01604 800628

IRTUAL events have proved vital when it comes to keeping people living with MND connected during the pandemic.

One of those who has attended a virtual meeting is David Owen, who lives near Caenarfon, North Wales. He was diagnosed with MND in February.

He said: “After speaking with our Area Support Coordinator Jo Cunnah in July I was invited to take part in a Zoom meeting.

“At first, I wasn’t sure, but Jo made me feel at ease and I was under no pressure. I joined the meeting and was immediately made to feel part of the meeting.

“It was an insight to meet folks with the same condition. I was able to talk about my anger and at one stage found it a bit emotional, but Jo reassured me. I joined a second Zoom meeting at which I felt a bit better. I joined my third meeting this month.This meeting was good for me. I met Sioned who lives not far from me. She gave me hope that I can be around for a few years yet. She was able to pass on information about Hafan Menai Hospice where we can get therapy when it reopens. We somehow slipped into our Welsh language for which I apologised to Jo, but she said it was lovely to hear.

“So far, I have found these virtual meetings are helping me cope a bit better. I pray every day for a cure to be found or perhaps slow it down.”

Another carer, who did not want to be named, said: “I look forward to the carers’ calls. It is nice to talk to people that are all connected to MND. Everyone understands as they are going through the same thing and you can share information with

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Pobl gyda MND yng Nghymru i elwa o gyllid brys

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Dywedodd Cyfarwyddwr Codi Arian y Gymdeithas, Linda Allen: “Bydd y dyfarniad hwn yn ein helpu i barhau â’n gwasanaethau i bobl â MND yng Nghymru i’r dyfodol. Dyma’r unig gyllid llywodraeth brys yr ydym wedi llwyddo ei gael hyd yma, felly rydym yn arbennig o ddiolchgar i Lywodraeth Cymru am ddeall gwerth y sector gwirfoddol ac ymateb mor gyflym i’r argyfwng”.

Dywedodd Catherine Miller, Pennaeth Grantiau a’r Amgylchedd WCVA: “Rydym yn hapus iawn ein bod, drwy Gronfa Brys y Gwasanaethau Gwirfoddol (VSEF), wedi gallu rhoi grant i’r Gymdeithas MND, sy’n darparu gwasanaethau hanfodol i’r rhai sy’n byw gyda MND yng Nghymru. Mae’r grant VSEF wedi cyfrannu at alluogi’r Gymdeithas i addasu a pharhau i ddarparu gwasanaethau drwy’r pandemig pan mae defnyddwyr gwasanaethau a gofalwyr yn profi anghenion newydd.

Rydym yn arbennig o falch bod y grant hwn wedi cyfrannu at ddatblygu ffyrdd newydd o wneud pethau i sicrhau parhad yn y gwasanaethau a ddarperir mewn cyfnodau fel y pandemig hwn.”

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bod yn cael yr un profiadau a chewch rannu gwybodaeth gyda gofalwyr eraill yn ogystal â chael cefnogaeth eich hun petai ei hangen arnoch. Fel gofalwr, rwy’n teimlo nad wyf yn cael fy anghofio.”

Mae pobl sy’n byw gyda MND hefyd yn parhau i fod mewn cysylltiad gyda diolch i gefnogaeth ymwelwyr Cymdeithas gwirfoddol. Maent yn cadw mewn cysylltiad drwy alwadau a negeseuon e-bost rheolaidd, i helpu sicrhau nad yw pobl sy’n byw gyda MND byth ar eu pen eu hunain.

Mae Lynwen Griffith wedi bod yn Ymwelydd Cymdeithas (AV) ers tair blynedd. Drwy gydol y cyfnod clo, parhaodd â’i dyletswyddau AV i gefnogi pedwar person y mae’n cysylltu â nhw bob ychydig wythnosau.

Dywedodd: “Rwy’n sgwrsio â’r sawl sy’n byw gydag MND neu’r gofalwr yn dibynnu ar bwy sy’n ateb y ffôn. Rwy’n gobeithio y bydd yn eu helpu i wybod bod ganddynt rywun ar ben arall y ffôn. Nid ydym bob amser yn trafod pethau am MND. Mae’n sgwrs gyfeillgar yn bennaf sy’n cynnig cefnogaeth emosiynol.

“Penderfynais ddod yn AV gan fy mod yn gofalu am rywun ag MND yn fy rôl fel Nyrs Gymunedol ac roeddwn yn chwilio am rywfaint o gefnogaeth iddo. Ar y pryd, nid oedd unrhyw AVs yn yr ardal a dim rhai Cymraeg eu hiaith ychwaith felly gofynnodd y Gymdeithas i mi a hoffwn wirfoddoli fel un a dyna sut y dechreuodd. Os gallaf helpu unrhyw un, mae’n werth chweil.

Mae’n rôl gadarnhaol iawn ac mae’n rhoi boddhad.”

Os oes gennych ddiddordeb bod yn wirfoddolwr, cysylltwch ag un o’n Cydlynwyr Cymorth Ardal am sgwrs anffurfiol ac i gael gwybod mwy am y cyfleoedd sydd ar gael. Ffoniwch Carol Smith, Cydlynydd Cymorth Ardal de Cymru a de Powys ar 01604 800615 neu Jo Cunnah I Gogledd Cymru a Gogledd Powis ar 01604 800628.

YDD POBL sy’n byw gyda MND yng Nghymru yn elwa o gyllid brys sydd wedi’i ddyfarnu i’r Gymdeithas gan Lywodraeth Cymru gyda chefnogaeth gan Gyngor Gweithredu Gwirfoddol Cymru (WCVA).

Fel rhan o’r mesurau a roddwyd yn eu lle i gefnogi’r sector gwirfoddol yn ystod y pandemig, mae Llywodraeth Cymru a WCVA wedi dyfarnu £46,352 i’r Gymdeithas i’w chynorthwyo i gefnogi costau ei staff a thîm gwirfoddolwyr yng Nghymru dros y chwe mis nesaf. Bydd y cyllid yn galluogi’r Gymdeithas i gynnal cyfres o ddigwyddiadau rhithwir ledled Cymru, gan gynnwys grwpiau cefnogi rheolaidd ac ymgynulliadau anffurfiol i bobl sy’n byw gyda MND, eu teuluoedd a’u gofalwyr a recriwtio a hyfforddi mwy o wirfoddolwyr i sicrhau bod y Gymdeithas yn gallu cefnogi mwy o bobl sy’n byw gyda MND o gymunedau amrywiol ledled Cymru.

Daw newyddion o’r dyfarniad mewn cyfnod heriol i’r Gymdeithas wrth iddi barhau i wynebu colledion yn incwm drwy godi arian o ganlyniad i argyfwng y coronafeirws.

AE digwyddiadau rhithwir wedi bod yn allweddol er mwyn cadw pobl sy’n byw gyda MND mewn cysylltiad yn ystod y pandemig.

Un o’r rheiny sydd wedi bod mewn cyfarfod rhithwir yw David Owen, sy’n byw ger Caernarfon yng ngogledd Cymru. Cafodd ddiagnosis o MND fis Chwefror.

Dywedodd: “Ar ôl sgwrsio gyda’n Cydlynydd Cymorth Ardal, Jo Cunnah, fis Gorffennaf, cefais wahoddiad i gymryd rhan mewn cyfarfod Zoom.

“I ddechrau, doeddwn i ddim yn siŵr, ond tawelodd Jo fy meddwl ac nid oeddwn dan unrhyw bwysau. Ymunais â’r cyfarfod ac roeddwn yn teimlo’n rhan o’r cyfarfod yn syth.

“Roedd cyfarfod â phobl eraill sydd â’r un cyflwr â mi yn agoriad llygad. Cefais sgwrsio am fy nicter ac ar un pryd cefais y profiad yn un eithaf emosiynol, ond cefais gysur gan Jo. Ymunais ag ail gyfarfod dros Zoom a theimlais ychydig yn well ynghylch hwnnw. Ymunais â thrydydd cyfarfod y mis hwn.Roedd y cyfarfod hwn yn llesol i mi.Cefais gyfarfod â Sioned, ac nid yw’n byw ymhell oddi wrthyf. Rhoddodd y gobaith i mi y byddaf o gwmpas am rai blynyddoedd eto. Roedd hi’n gallu rhannu gwybodaeth ynglŷn â Hosbis Hafan Menai lle gallwn fynd i gael therapi pan fydd y lle yn ail-agor. Byddem ar adegau yn troi at y Gymraeg ac ymddiheurais i Jo, ond dywedodd mai hyfryd oedd clywed yr iaith.

“Hyd yn hyn, mae’r cyfarfodydd rhithwir hyn yn fy helpu i ymdopi ychydig yn well. Rwy’n gweddïo bob dydd am iachâd neu driniaeth i’w arafu.”

Dywedodd gofalwr arall, nad oedd am gael ei enwi: “Byddaf yn edrych ymlaen at alwadau’r gofalwyr. Mae’n braf siarad gyda phobl sydd â chysylltiadau â MND. Mae pawb yn deall gan eu

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We’ve got a sack load of festive fundraising ideas this Christmas

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HIS Christmas we need your support more than ever before to ensure we can support families affected by MND. That’s why the Association’s fundraising team has developed an assortment of festive fundraising ideas, with something suitable for everyone.

Busy parents with no time to spare can make a donation instead of writing and sending Christmas cards and share a branded Merry Christmas message on social media. Those

who’re seeking an adrenaline-filled challenge can sign up for a December Dip and head to the coast to brave the chilly waves.

Alternatively, supporters looking to get creative can join our wreath-making workshop with RHS Chelsea gold medal winning garden designer Sue Hayward. Essentially, we’ve got more festive fundraising ideas than Santa has toys in his workshop!

To sign up or find out more about any of these events and ideas visit www.mndassociation.org/festivefundraising

Make your own Christmas Wreath Get creative and join us for a virtual wreath making workshop with Sue Hayward, RHS gold medal-winning garden designer.

Make a splash this Christmas

Join our PJ Day this Christmas

Try something new this Christmas and brave the open water for our sponsored December Dip. Are you up for the challenge?

Making a difference in the fight against MND just got cozy.

On the 10th of December we’re giving you a free pass to wear your festive pyjamas or winter onesie all day.

Take part in a Virtual Santa Run this Christmas Tis the season to get your family running! Join our virtual 5k Santa run on the 5th and 6th of December.

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Make a Donation in Lieu of Christmas Cards

Take part in a festive walk

Donate to support the fight against MND instead of sending cards. In return you’ll receive a virtual badge to share on social media and spread your festive wishes.

Help to bring us a step closer to a world free from MND this winter, by completing your own Winter Walk.

www.mndassociation.org

Get shopping and give the gift of hope this Christmas

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F you’re starting your Christmas shopping soon why not help support the MND Association at the same time?

Our Christmas Shop is available online now with plenty of Christmas treats for all the family. As well as all the essentials, such as wrapping paper and cards, you will also find a great range of advent calendars and gifts.

The last day for guaranteed Christmas delivery is 7 December so make sure you visit www.mndassociation.org/shop today!

If you regularly shop online did you know that Amazon will

Play the Christmas raffle today!

donate 0.5% of the price of every eligible product you buy to us?

Shop via smile.amazon.com and you’ll be prompted to select which charity you want to support. Simply search for Motor Neurone Disease Association and select us as your charity of choice. You only need to do that once and AmazonSmile will remember.

Anytime you buy something that is marked as AmazonSmile eligible you’ll be helping us to fight MND.

Wheelchaircars.co.uk

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UR Christmas raffle is back again for 2020. In this year’s festive fundraiser, you could win an amazing top prize of £5,000. But best of all, by taking part you will be helping improve the lives of people living with MND and helping fund vital research!

Each ticket costs just £1 and the more that are sold, the bigger difference we can make together.

Taking part couldn’t be easier. Simply visit www.raffleentry.org. uk/mnda to enter online or call our ticket hotline on 0330 002 0342. The raffle closes on 16 December and the lucky winners will be drawn before Christmas on 23 December, so please don’t miss out - play today.

As well as buying tickets yourself, you may also be able to sell some to friends, colleagues and neighbours. You can order extra books of tickets by emailing raffle@mndassociation.org.

We’d also like to thank all of our members who entered and sold tickets for our Summer Raffle this year; you helped raise over £110,000 to help support people with MND and their families.

Congratulations to the winners who included Valerie Robson who won the first prize of £5,000, Jake Allen who won £1,000 and Stuart Loder who won £500. For the full list of winners, please visit www.mndassociation.org/raffle Regulations mean entry is open to all UK residents excluding Northern Ireland, Jersey, Guernsey and the Isle of Man. Tickets are not for sale to or by anyone under 16 years of age.

FREE NO OBLIGATION HOME DEMONSTRATIONS USED VEHICLES FROM £2995

Tel: 0161 793 5934 Full details on our website, www.wheelchaircars.co.uk

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At the forefront of the A

S we learn more and more about MND, and move ever closer to precision medicine, a revolution in clinical trial design has begun.

Fuelled by a desire to compare multiple treatments in different sub-groups of patients with related conditions, and to minimise the time between clinical trials, innovatively designed platform trials have started across the UK and around the world.

Traditional clinical trials tend to follow the same format – participants are randomly split into either a group that will receive a single trial drug or a placebo group which will receive a ‘dummy’ drug and, we end up with a ‘one-drug-fits-most’ treatment option.

Platform trials allow for multiple treatments to be evaluated against a common placebo group and can be set up to run continuously over many years, without the ‘start-stop’ arrangement of traditional trials. They offer the promise of ‘responsive adaptation’ – the flexibility to drop ineffective treatments and add new therapies for assessment, allowing clinicians to better meet the unique needs of patient populations within a study.

TRICALS – when we all work together, we can find a cure for MND The MND Association is a leading participant in TRICALS (Treatment and Research Initiative to Cure ALS), the largest European MND research enterprise to date. TRICALS brings together the very best experts from top research centres across 14 countries in a unique collaboration to find effective treatments for MND. Because MND is not a single disease, TRICALS is not looking for a single solution, but aims to find precise treatments for different forms of the disease. Analysis of DNA samples collected through Project MinE, another hugely successful collaborative project funded by the MND Association with generous support from Credit Suisse and London City Swim Foundation, revealed that each person with MND holds a vital part of the MND puzzle within themselves and putting this puzzle together will help to find new and effective treatments.

However, less than 5% of people are eligible to take part in clinical trials, usually due to strict inclusion and exclusion criteria. By using a built-in projection model in its trials, which is able to predict how a person’s disease is likely to progress, TRICALS estimates that around 60% of people with MND will be able to take part and make a meaningful contribution in the search for effective therapies.

MAGNET The MAGNET (Multi-arm, Adaptive, Group-sequential trial NETwork) adaptive platform trial enables the investigation

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of multiple treatments at the same time. One over-arching protocol will allow for rapid screening of new candidate treatments, standardised participant recruitment, data collection, analysis and management. New candidate drugs can be added to the platform trial at any time.

Lithium carbonate is the first promising candidate therapy to be studied using the MAGNET trial. Previous studies showed that although the drug was safe in people with MND, it had no beneficial effect. However, re-analysis of the genetic make-up of the original trial participants found that the drug appeared to increase the survival probability for people with a variant in the UNC13A gene, which is not considered to be a genetic cause of MND but a modifier of disease progression.

This Phase 3 treatment arm (known as PreLude) aims to confirm the effectiveness of lithium carbonate exclusively in people with MND who have the UNC13A gene variation, which only occurs in about 15% of people with the disease and is not routinely tested for. Potential participants in the trials will be identified using data collected in Project MinE and through the collaborative efforts of the TRICALS consortium.

Could this be the first step to a truly personalised medicine for a particular group of people with MND?

clinical trial revolution Lighthouse 2 and TUDCA-ALS trials TRICALS is also sponsoring the Lighthouse 2 and TUDCA-ALS trials.

The Lighthouse 2 trial, which is a Phase 3 trial, will test the effectiveness of the antiretroviral drug Triumeq, which was seen to slow progression of the disease in a Phase 2 trial. A specific retrovirus, HERV-K, has been found in the brain and motor neurones of people with MND, making Triumeq a potential therapy.

TUDCA (tauroursodeoxycholic acid) is a small molecule that is being explored for its potential as a treatment for MND. TUDCA may decrease nerve cell death through its ability to act as an antioxidant that prevents toxic reactive oxygen from accumulating inside cells. There may also be an effect on immune function. This is also a Phase 3 trial.

More than clinical trials TRICALS is about more than clinical trials. It aims to explore ways in which clinical trials, and the information we learn from them, can be used more effectively to benefit the greatest number of people with MND. By sharing data, tools and resources that meet a common goal of finding effective therapies for MND, and by collaborating closely with patients and MND foundations, TRICALS will increase the speed of research to bring effective therapies to people living with MND as fast as possible.

trazodone which are already approved as treatments for other diseases, to see if either of them slow down the progression of MND compared to a placebo group. MND-SMART is designed to run continuously for years to come to test treatments that may slow, stop or reverse the progression of MND.

HEALEY-ALS Platform Trial The HEALEY-ALS Platform Trial is being led by researchers at the Sean M. Healey & AMG Centre for ALS at Massachusetts General Hospital, in partnership with Tackle ALS, in the USA and will simultaneously study the effects of five drugs in people with MND. We look forward to hearing the outcomes of these trials in the future.

Due to the current Covid-19 crisis, continuation of these trials may have been paused.

What does the future hold for people with MND? Platform trials can find beneficial treatments with fewer patients in less time and with greater probability of success than a traditional clinical trial. In an era of personalised medicine, platform trials provide the innovation needed to efficiently evaluate modern treatments and speed up the process of finding a cure for MND.

Resources TRICALS: https://www.tricals.org/

Other clinical trials

MND-SMART: https://www.mnd-smart.org/

There are two more platform trials currently in preparation: MND-SMART, which will recruit participants within the UK, and the HEALEY-ALS Platform Trial which is recruiting at 54 sites across the USA.

HEALEY-ALS Platform Trial: https://www.massgeneral.org/ neurology/als/research/platform-trial Project MinE: https://www.projectmine.com/ Could MND be treated with HIV drugs?: https://mndresearch. blog/2019/07/17/could-mnd-be-treated-by-hiv-drugs/

MND-SMART MND-SMART (Motor Neurone Disease-Systematic Multiarm Adaptive Randomisation Trial) is being led by the Euan MacDonald Centre for MND Research based at the University of Edinburgh, alongside University College London and the University of Warwick. It is designed to treat as many people with MND as possible, regardless of how the disease or current treatments affect them.

The trial will initially test two drugs, memantine and

Lighthouse Project shines a beacon on HERVs and their role in ALS: https://mndresearch.blog/2017/09/25/lighthouse-projectshines-a-beacon-on-hervs-and-their-role-in-als/ TUDCA clinical trial: https://www.mndassociation.org/app/ uploads/2019/09/DB-TUDCA-clinical-trial.pdf Clinical trials: https://www.mndassociation.org/app/ uploads/2019/02/D-Clinical-trials.pdf

Help us beat MND – become a Cure Finder today If you’re interested in MND research and would like to get closer to the researchers doing everything they can to beat MND, why not become a Cure Finder today?

For a monthly donation, you’ll get a behind-the-scenes look into and

Cure Finders exclusive updates from the front line of MND research. You’ll get to know the researchers who are leading the way, gain a deeper understanding of their work – and become a part of the

community that believes MND can be beaten. And 100% of your donations will help fund vital research.

If you would like to become a Cure Finder today, please complete and return the form attached to the back cover of this edition of Thumb Print.

www.mndassociation.org

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Connecting the global MND research community through virtual Symposium

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UR International Symposium is the largest medical and scientific conference specific to ALS/MND in the world, and is the premier event for discussion on the latest advances in research and clinical management.

Despite the obvious restrictions, the Association is determined to maintain this important date in the MND research community’s calendar and earlier this year we announced that the Symposium would instead be held online from Wednesday, 9 December to Friday, 11 December.

The meeting will be delivered over three shortened days, scheduled around the GMT/EDT working day (afternoon UK time), with additional material available before and after the ‘live’ event. Each year we invite the leading researchers from around the world to present their work as plenary speakers. This year is no different, and more than 20 of the top scientists and clinicians specialising in ALS/MND will join our virtual platform to share the latest insights into research across a range of session themes. These cover basic science, clinical research, therapeutic strategies, from research to care, disease management and clinical trial updates.

The virtual event will also feature a round table discussion on the impact of coronavirus on MND research, care and the community around the world from a range of different perspectives.

A very exciting addition this year is the e-Poster Hall, supported by authors presenting their work through a threeminute ‘lightning explainer’ video featured alongside their scientific poster PDF. This will be accessible on demand throughout the Symposium, with live discussions taking place during the designated poster sessions, providing the opportunity to communicate directly with the authors.

Although the Symposium is primarily aimed at researchers and healthcare professionals working with people affected by MND, members of the public

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are welcome to register to attend this virtual event. Please note, however, that content is targeted at a scientific and clinical audience. The registration rate for this year is just £45 and this will help cover the costs of organising and hosting the event.

For those registered, during the virtual event there will be opportunities to submit research questions to presenters through live, moderated Q&As and discussions, and opportunities to network with other delegates through the meeting hub and networking groups.

We are delighted to announce that this year sees the inaugural Stephen Hawking Memorial Lecture. The lecture aims to bring speakers from outside the immediate world of MND research, to stimulate new ideas and research collaborations. This year’s lecture will be delivered by Prof Rudolph Tanzi, Professor

of Neurology at Harvard University, USA. We would like to thank the Stephen Hawking Foundation for its support of the lecture this year and its commitment to fund this important opening plenary lecture for the next two years.

Despite the challenges of coronavirus, we have worked hard to continue to facilitate the sharing of the latest developments in MND with the global research and care community.

As always, we will explain the key highlights from the Symposium to our members and the wider public. This will include use of our Periodic Table of MND Research on the Symposium website, which will be updated with the latest news from the event, and reports on our MND Research Blog at www.mndresearch.blog.

For more information and updates on the Symposium, visit https:// symposium.mndassociation.org

Looking ahead to the future with hope and optimism

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S many of you will know, the Association held its very first online AGM earlier this month.

While we had to make the difficult decision to cancel the annual conference which usually takes place on the same day, the AGM continued unhindered and was well received by our members. I really appreciate that so many of you took the time to join us.

During the meeting, I was able to reflect on a quite extraordinary year – a year which has taken us from the events which marked our 40th anniversary, through to the present day and the Association’s prompt and agile response to coronavirus.

We touched on the incredible support of our members, who have done so much to support our work in the most challenging of circumstances and the difference we have been able to make to the lives of people living with MND in these uncertain times.

The Association’s Honorary Treasurer Tim Kidd, updated members on our financial position and reported on a strong year for central fundraising as well as our branches and groups who together raised £2 million – a quite extraordinary achievement.

I was also able to report that while much uncertainty surrounds the coming months, the Association remains strong and resolute in its mission to continue the care it offers to people living with MND and those closest to them.

Looking ahead, we end the year with another of the biggest events in our calendar – the Association’s International Symposium on ALS/ MND which is also being held online for the first time.

At the time of writing, some 800 people have already registered for this year’s event and it promises to be one of our most successful ever.

There has certainly never been a important time for MND research.

The urgency is growing but so too is the optimism and enthusiasm and thanks to your support – our Association is right at the heart of it.

You’ll be able to read more about the Symposium in the Winter edition of Thumb Print in January. In the meantime, I would like to wish you all a peaceful Christmas and new year.

Richard Coleman, Chair of the Board of Trustees

www.mndassociation.org

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In March, Gill Gibson’s beloved husband Jerry died from MND after being diagnosed with coronavirus. Here, she speaks openly about coping with bereavement during lockdown and coming to terms with her enormous loss. This feature contains themes readers might find distressing.

‘I will always look back with sadness, but with so much pride’

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CARER from Essex has spoken of her heartbreak after her beloved husband Jerry died from MND during lockdown in March.

Gill Gibson had cared for Jerry, a wellrespected district and parish councillor and dedicated West Ham fan, since he was diagnosed with MND in September 2014.

She said: “Jerry was diagnosed with MND in September 2014, but he had been experiencing symptoms long before that. He had started experiencing cramps when he was holding a knife and fork and fasciculations (twitching) in his upper arms. He made an appointment to see the doctor, but they told him it was nothing to worry about.

“As time went on, I started to consult ‘Dr Google’ and I started to suspect that it could be MND. At around the same time, the Ice Bucket Challenge was taking place and our niece took part. At the time, I remember thinking: ‘I’m sure Jerry has MND.’ “By August, he started saying that his leg was floppy, and I decided to go and see my doctor without him. I explained

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Gill and her husband Jerry on holiday together

everything that had happened, and my doctor said I was right to be concerned.

She saw Jerry and he was referred to a neurologist. He then saw a private neurologist, who said he had a serious neurological condition and after some tests he was finally diagnosed with MND. “Jerry told me, ‘There are three ways we can deal with this. We can mope, we can spend the rest of our lives getting drunk or we can make the best of the time we have left.’ So that is what we did.”

In the months that followed, Jerry and Gill decided to make as many memories as possible, travelling the world and enjoying time with family and friends.

Gill explained: “We decided to go on holiday and were fortunate enough to be able to go on a number of cruises.

We went all over the world – to the Caribbean, the Mediterranean, to Israel,

Jerusalem, Singapore and on the Queen Mary to New York. During one trip we were fortunate enough to meet Celia Imrie, one of Jerry’s favourite actresses.

She was wonderful and she hugged him whenever she saw him.

“It soon became clear that he had frontotemporal lobe issues – his concentration disappeared, and he couldn’t read. That meant that much of the organising fell to me.

“The MND Association was brilliant.

As soon as he was diagnosed, I went onto the Association website to get as much information as I could – that was really helpful. We were looked after by the multi-disciplinary team in Southend and we were told that he had a slowly progressing form of MND. We felt that at least we might have some time.

“In July 2019, Jerry was still able to get up from his wheelchair but then

temperature regularly. He was taken back into hospital with pneumonia and was treated with antibiotics on a special ward. He was tested for coronavirus in hospital.

“A few days later I was contacted by the specialist nurses who asked me if I could care for Jerry at home. I told them, ‘Of course, I can,’ and they agreed for him to come home. Looking back, they were letting him come home to die.

“That night, I lay down with him in bed and stayed there all night. When I woke up the next morning at 6am I could see he was unconscious, and I called the palliative nurse and an ambulance came.

They told me he had gone, that he had died during the night. In all the sadness, I was pleased that we had been together.

If he had died in hospital, I wouldn’t have been able to be there with him.

“Because he died at home, the coroner was involved. I was even interviewed by the police on my doorstep. A short time later, the nurses from the hospital called to say that Jerry had tested positive for coronavirus - I had to explain he had already died. I was then isolated for two weeks.

suddenly his legs completely gave way.

That was the last time he walked. From then on we were dependent on a hoist to move him around.”

By December, Jerry’s condition had worsened and on Christmas Day he almost died.

Gill said: “Jerry’s oxygen levels were falling dramatically. I was told this could happen again at any time, it could be days, weeks, months – nobody knew. In January he came home and a team of carers came into our home four times a day.

“By March, coronavirus was becoming a real issue and I spent a lot of time umming and ahhing about whether we should let the carers come in. It would have been too much for me to care for him on my own so we let them in, but I was worried about it. I got masks for them and took Jerry’s

Jerry enjoys a special moment with one of his favourite actresses, Celia Imrie

“I wouldn’t wish the first ten or 12 weeks after Jerry died on my worst enemy. It was horrendous. There was the constant yearning. I kept saying, ‘I want him back!’ like a toddler having a tantrum, and then there was the guilt.

I felt so guilty that I had let the carers in, although, of course, I don’t know where he caught it from. To begin with, I couldn’t see past MND and the nightmare of the past few weeks, but now when I think of him, I have happy memories and I smile.

“I have wonderful friends and family and, even though I was in isolation, they brought food and called to make sure

I was OK. Looking back, I think I coped better because of lockdown. I’m not sure I would have coped at all with people coming around all the time and fussing. I felt more in control and able to speak to people when I felt ready.

“Organising Jerry’s funeral in lockdown was difficult. It took a while to get hold of a death certificate. He was Catholic and I knew that he wanted to be buried at Rochford Cemetery. We were allowed five people at the service which was held at the graveside. In the end, there were four of us – me, Jerry’s son Paul, my brother and the priest.

Friends create a guard of honour as Jerry’s funeral cortege passes through the town of Rochford

“The hearse left from our home and all of our neighbours came out onto their doorsteps. We went through the town and past his local pub The Golden Lion.

The streets were lined with people, all socially-distanced and clapping as we went past. He would have been amazed and so pleased, it just such a shame that he couldn’t see it all. I drove myself to the cemetery and I cried the whole way there. But seeing those people turned the bleakest of days into something amazing – I will always look back with great sadness, but so much pride.

“I was having counselling before he died, and I am having bereavement counselling now. Nothing compares to the pain of losing Jerry. MND cost us our future and that is hard to come to terms with, but I am starting to enjoy myself now. I go out walking two or three times a week and I am also meeting my friends in their gardens.

“Jerry loved people and would speak to anybody. He had the most wonderful smile and would often sit outside in his wheelchair on our drive and just speak to people as they went past. He was a West Ham supporter for 55 years and a councillor. He was just amazing.” www.mndassociation.org

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Mission 5000: E

VERY year, hundreds of our #TeamMND runners, walkers and cyclists join sporting events including the London Marathon, Great North Run and Prudential Ride London cycle ride.

They usually attend with families and friends, completing their chosen race after many months of training.

We’re often there when they finish with a sweaty hug, eager to share in their excitement but also their sadness if the loved one who inspired them wasn’t there to see it. This year coronavirus halted the races and subsequent celebrations, often too late to stop the many hours of training they had already completed.

Not wanting anyone’s training to go to waste, the Association launched Mission 5000. Together we wanted to unite the MND community to cover 5,000 miles - a mile for every person living with MND in the UK today. Participants could cover any number of miles using the discipline of their choice. Many chose to run, walk or cycle but some opted for more unusual methods including kayaking, paddle boarding, knitting and unicycling.

The challenge officially started on 13 September, the day the Great North Run was due to take place and finished on 18 October when runners should have been in Portsmouth completing the Great South Run. MND Association patron Charlotte Hawkins set participants off on the virtual start line. She sent a message of good luck before sounding a klaxon and starting her own Mission 5000 miles by completing a long walk accompanied by her daughter and dog.

Many people living with MND got behind the challenge. Retired Methodist Minister Andy Laird immediately contacted friends and family and urged them to get involved. No stranger to virtual fundraising himself, he’d already completed a virtual triathlon. He said: “I did it because the MND Association’s income will be drastically reduced as a

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consequence of the coronavirus. It needs every penny it can get if it is to continue to support me and others with this horrible killer disease.”

Dawn Johnson, who like Andy has an Association Fightback Fund, was diagnosed with MND in 2016 and last year was pushed around the course of the Great North Run. Because the 2020 event was cancelled, she took part in Mission 5000 and was pushed two miles in her wheelchair by husband David.

She said: “It is so important to remain mentally strong and positive and this can only be achieved with a strong will and loving, supportive family and friends. I try to look positively at what I can still do even though every day is a battle”.

Barry Wilson, who is also living with MND, was planning a fundraising abseil this year. When it was cancelled, he pledged to cycle an incredible 500 miles on his static bike at home.

Ian Lev took part alongside his neighbour Andrew. Each week they took on a different 10-mile route, Ian on his mobility scooter and Andrew on his bicycle or even roller blades. Ian said: “I was reminded how difficult it has been for the Association to raise money with so many events being cancelled.

Mission 5000 is our chance to help make a difference. My motto is ‘Keep strong, keep positive’ and that’s what we have to do.”

One family, based in Wales, came

Accomplished!

together to form Mission Matthews with a 19-strong team pledging to cover between 15 and 100 miles each. This is with the exception of former Great Britain Iron Man, Clive Granger, who clocked up an incredible 650 miles during the five-week period.

Markus Matthews, whose wife Christine is living with MND, said: “We get the most fantastic support from both our Care Network in Cardiff and the local Association. This disease is horrible, but we always have a positive outlook that one day it can be defeated.”

Thanks to social media the Mission 5000 challenge went global, with participants taking part in countries including the USA, Russia, Spain and France. Brothers

Mick and Lee Daglish even recruited their friend Alan, who lives in Australia to join them in their Mission 5000 challenge.

Together, The 3 Amigos ran 350 miles, with the different time zones meaning the friends were running around the clock. Lee said: “We set up a group chat between the three of us so we could keep each other informed with our progress. At the end of each week we posted our weekly mileage onto social media to keep the fundraiser fresh in people’s minds.”

Lee and Mick even completed some miles in fancy dress to raise extra awareness. Because we were dressed up a lot of people stopped and asked us why we were running. It’s amazing

to find out how many people have been touched by the effects of MND through either their friends or family”.

Lee’s wife Carolyn was finally diagnosed with MND in February this year, after months of tests, aged just 35. Lee said: “In the space of a year it has rendered her paralysed. She has started losing her voice now as well and has to use a ventilator to help with her breathing. I want to find a cure so no one has to go through what we have.”

The Frank family took part with family and friends by completing a four-mile walk through Wakefield, led by Eric, who is living with MND, in his wheelchair. His daughter Micaela commented: “MND has devastated us as a family in more ways than we could have ever imagined and has completely changed the dynamic of our family. The only thing as a family we can do is to try and find a positive from this cruel disease as we are very aware that there is only one ending with MND.” Health professionals working with patients with MND were also keen to show their support for the MND community. A team from Huddersfield including physio, speech and language and occupational health therapists joined the challenge and pledged to cover 950 miles. The team set up a Facebook group Mission 5000 Local Adult Therapies Challenge to document their progress, sharing updates including live videos as they clocked up their miles. The team was delighted to raise over £1,000 thanks to generous donations from friends, family and their patients.

At the time of going to print, the 764 people who joined Mission 5000 have covered an incredible 20,499 miles. Most importantly they’ve raised an incredible £132,000 and counting.

We hope in 2021 traditional sporting events will resume. We have charity places in events including the Royal Parks Half Marathon, Brighton Marathon, London to Brighton Cycle Ride and the Great North Run. To find out more visit www.mndassociation.org/fundraising www.mndassociation.org

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“Painting helps take cial gang called Hello everyone, e p s a e v a h I d n a my friends My name is Max, ur online hub o in the MND Buddies. e m ti y n a s u hang out with sure you You can come and www.mndbuddies.org – just make d at which you can fin that you’re going online. p es to play and m tell your grown-u a g , d a e r to s ie there – stor There’s lots to do nd colour! aw a ou enter our y ’t n things you can dr o d y h w , o d I ing as much as r u lo o c e v lo u o y If competition? d r a c s a r brightest and u tm o is y r h h C it w p u e m amazing o and glue and c ned into a r r e tu tt e li b g l r il u w o y n b ig a s r e It’s time to g if you win, your d at, it will be sold in our t a th w o n k u o y id boldest design. D dy for next year? Better than th on – cool or what? ti ea Christmas card r raise money for the MND Associa der and ages n lp u e d h n a to s p r o a h e s y e t n h li on o categories: eig night. If your grown-up tw in d e g d ju e b l er 2020 at mid The entries wil b m e c e D dassociation. n 1 1 .m is w w te w a d it g is v in s s n lo nine-16. The c rms and conditio te t u o b a n o ti a m wants more infor n about the te it r d w r a s c a s h a ia tm h p is o r S h org/c tory my friend the Association. s e th d a e r , d te r Before you get sta ring lockdown to raise money for d du much Sophia. o cards she designe s u o y k n a th , g zin tay safe! s d n She really is ama a s a tm is r h C ve a wonderful a h , e m ti t x e n l ti Un

Max

Ali the Alligator Eric the Elephant

Carly the cat

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Rini the Rabbit

Meet my other buddies

my worries away” Hello everyone!

“My name is Sophia. During lockdown I started to paint because I really enjoy it, and it makes me feel relaxed and takes my thoughts away.

“Sometimes my daddy gets frustrated or upset with his MND so that makes me upset as well and I worry about him, so that is when I sometimes take myself off and get changed into my favourite old snuggly jumper and go and paint.

Painting takes my worries away.

“Then I had the idea of selling some of my artwork at local craft fairs but all of the fairs were cancelled because of coronavirus. So I had another idea, to make my artwork into cards. I have always wanted to sell my artwork and one day have my own exhibition like my favourite artists Doug Hyde, Csilla Orban and Philip Gray do. I asked my mummy and daddy if I could donate some of the money I make to the MND Association.

but the best bit is knowing that 70% of the profits are going to a great cause, the MND Association.

mummy then suggested I designed my own website to try and sell my cards.

With some help from my Mummy, my website www.SophiaTowART.co.uk was launched and within three days all my cards were sold out. I was very excited and pleased that people loved my cards and I had some really nice messages from people who work in art galleries,

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www.mndassociation.org

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“I am still the same pe Beverley pictured with her husband, Dave and their cockapoo, Truffle Picture courtesy of Photography by Tanya

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rson inside my body” A

NEW chapter is just beginning for former teacher Beverley Fairbanks as she celebrates the launch of her first book.

Beverley, who was diagnosed with MND in 2019, started writing short stories when her son was young and her passion for writing has grown ever since.

She started writing her new book The Mystery of the Orphanage in 2017 and decided to publish it herself. It is now available to buy on Amazon with a percentage of the profits being donated to the MND Association.

She said: “While teaching primary aged children in Slough I used to tell them some of the stories and they loved them. The idea for this book came to me as we started renovating yet another old building.

It was to be part of a trilogy about a fictional Nottinghamshire village. I have the second book in draft insidee my head and in a notebook but MND has taken over for now.”

Beverley was diagnosed with MND after experiencing difficulties n following a spinal fusion operation in November 2016.

She said: “The discs in my lower back had degenerated and I was in constant pain while trying to walk, sit or stand. I had hoped the operation would give me back the ability to enjoy working in the garden, and to continue with the never-ending task of making soft furnishings for our home. The pain never went away, and I found it harder to do simple everyday tasks such as getting dressed independently. In 2017 I was forced to take early retirement as my back was never going to be the same again.“I joined the gym at Nottingham University and tried to build up my strength though a mixture of circuit training and Pilates. As time passed, I noticed a definite weakness in my left side.

I kept dropping things, I could no longer balance on my left leg, and I was experiencing problems with my speech. I was slurring my words and having some strange mood swings. I would wake in the night crying or laughing hysterically. Friends thought I was permanently under the influence of alcohol. In April 2019 I realised that this had to be more than just being tired and I went to see my doctor. He thought I had had a stroke, and on 23 April I was admitted to the stroke clinic at Nottingham City Hospital.

“I was diagnosed with MND on 29 April and my life changed forever. If I had been hit with a bus the pain would have been less than the experience of being diagnosed with a terminal condition.”

Beverley says that in the past year her life has changed beyond recognition, but she is taking it one day at a time with love and support from her husband Dave and her son.

She said: “My life is very different now. In the space of a year I have gone from being able to walk independently to being in a wheelchair permanently. My left hand and arm have very little sensation. My left leg has a mind of its own, and no one can understand a word I say.

Basic tasks that I took for granted require another person to assist me. My pride in my appearance is difficult to keep up, as I must balance my requests for help with more pressing needs, such as using the toilet.

“I joined the Nottingham Branch in May 2019, and I am the only person of colour. I attended the Association’s conference last year and saw no black women and only two Asian men. I don’t believe I am unique. I suspect there are a number of black and Asian people with the disease who are struggling to deal with their diagnoses.”

“MND is cruel, I pray one day there will be a cure.

For those of us living with it, I would say try as much as possible to live your life to the full. Self-pity and regret will not help in this fight. It hasn’t affected my brain; I am still the same person inside this body.

Pace yourself and celebrate what is good in your life.

“Truffle our beautiful cockapoo dog is such a pleasure in my life. I have accepted MND and thank God for each day he gives me.”

We are here for everybody affected by MND or Kennedy’s Disease in England, Wales and Northern Ireland. The Association supports diversity, equality and inclusion in all its services.

Please let us know if you have specific needs or preferences when using our services. If you need information in a language other than English visit www.mndassociation.org/languages or ask someone to contact MND Connect helpline on 0808 802 6262 on your behalf.

www.mndassociation.org

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Phil is blinking Rachael and Catherine ride into the record books

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FTER an epic journey which saw them travel more than 18,000 miles over 263 days, tandem cyclists Catherine Dixon and Rachael Marsden have ridden into the record books.

In July it was formally announced that Catherine and Rachael – also known as TandemWoW - had claimed the new world record for the fastest circumnavigation of the globe by tandem bicycle, beating the previous world record set in May 2019 by Lloyd Edward Collier and Louis Paul Snellgrove.

During their epic journey, Rachael, an MND nurse consultant and Catherine, who is married to the Association’s Chief Executive Sally Light, travelled through 25 countries enduring challenging weather conditions and a dramatic return to the UK as the coronavirus pandemic took hold across Europe.

Their record-breaking feat also raised more than £40,000 for the Association and Oxfam.

Speaking after the announcement was made, Catherine and Rachael, pictured above, said: “We are incredibly proud to be Guinness World Record title holders. The experience was incredible and certainly not without its challenges.

Setting the world record really was the adventure of a lifetime and we hope it will inspire others to believe that anything is possible and to follow your dreams.”

The TandemWoW story features in The Guinness Book of World Records 2021 which was published in September.

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UST months after breaking the Guinness World Record for the full marathon wheelchair push alongside his friend Marcus Green, Phil Rossall has completed his most ambitious challenge yet.

During lockdown, Phil, who was diagnosed with MND in 2016, was determined to continue fundraising for the Association and decided to raise money by virtually climbing Mount Everest – counting blinks instead of steps.

“Sometimes it felt like hard work when I might have preferred doing something else, but I kept thinking how any money raised might help the Association, which gives such brilliant support for people with MND.”

He said: “When I was first diagnosed with MND I was given one to two years to live. In July, I completed my fourth year and I am determined to support the Association with everything I’ve got. Having done some fundraising in the past, I had to come up with a new idea for this year.

“What challenge would you give to someone upwardly immobile like me? Someone who has lost the use of just about all his muscles and can only control his thumbs and eyes. Well, hitch-hiking was out of the question, and I needed my thumbs for writing.

That leaves the eyes. The answer was blinking obvious – I set the challenge of climbing first to the top of tall buildings and then to the top of various tall mountains using only the mighty power of my eyelids.

“I can no longer do the climbing. I can’t even do the stair climbing, so I did the third best thing, replacing steps with blinks. Take my word for it, my ascent was more arduous than tens of thousands of steps would be for someone able bodied and sane.

“The challenge took a couple of months, starting on 6 May and

Phil celebrating after reaching the end

finishing on 19 July – 58,070 blinks later. Sometimes it felt like hard work when I might have preferred doing something else, but I kept thinking how any money raised might help the Association, which gives such brilliant support for people with MND. “Progress was slow and some days I was only able to do a small number of blinks, but I could make up for it on other days when I had more energy. I also had to have a break due to a dose

g amazing!

of pneumonia which saw me in the respiratory ward of the local hospital for 24 hours.

“The first and last few blinks were shown as video clips on Facebook and the Just Giving page is still open for donations to the MND Association.”

So far, Phil has raised an incredible £3,475 for the Association. To support him, visit his Just Giving page at www.justgiving.com/fundraising/ phil-rossall3

Phil pictured with his friend and former colleague Marcus Green after breaking the Guiness World Record for the full marathon wheelchair push in December last year

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Campaign pushes for easier access to accessible homes and housing adaptations

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HE MND Association has launched the first phase of Act to Adapt, a campaign that will push for accessible homes and a fairer and faster system for delivering housing adaptations for people with MND. At present, financial support for many home adaptations is delivered by local authorities (in England and Wales) and the Northern Ireland Housing Executive , through Disabled Facilities Grants (DFGs), but many people affected by MND still face significant challenges including high costs, the length of the DFG process, and a lack of information and support.

The launch of the Act to Adapt campaign follows the publication of a report late last year which highlighted the problems people living with MND face when it comes to living independently and safely in their own homes.

The report concluded that while

many people living with MND want and need to adapt their homes, they face enormous challenges to do so – from the time it takes to go through the adaptations process to the high costs involved.

As a result, the Association is now calling on local and national government, to implement the recommendations set out in the Act to Adapt report and help make the process much easier for all those affected by MND. The Association’s Act to Adapt report sets out a range of recommendations and examples of good practice which

would not only help people with MND, but also many other people who need accessible housing. These include fast-tracking support for people with a terminal illness, removing the means test for DFGs for low-cost and high-impact adaptations, and maintaining a register of accessible homes that people can move to.

The first phase of Act to Adapt saw us raising awareness of the issue, sharing real stories of what it’s like to access home adaptations and calling on local councillors to show their support for the campaign. Now, as we transition into Phase 2, we will be targeting councils in England and Wales and the Northern Ireland Housing Executive to call on them to help us make a difference.

If you would like to get involved and support this campaign go to (www. mndassociation.org/act2adapt

A Personal Story – Gerry Mulhall Gerry was told that he would have to wait 12-18 months to get vital home adaptations as the council told him that there were ‘no funds this year for any home improvements.’ It wasn’t until the intervention of his MP and the help of a builder, that any progress was made at all.

“The original occupational therapist came in and recommended that a lift would need to go from the dining room straight up into the bedroom.

However, we had already decided we didn’t want a lift taking up a third of the dining room, especially given the fact that we had young children and we were not interested in having a wet room upstairs. There was also difficulty getting a lift in anyway because they had a maximum weight limit of 300kgs which I exceeded when I was in my wheelchair.

“They rejected the whole thing and we didn’t receive a recommendation

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to the council from the original occupational therapist. The council came out with a lift engineer and they weren’t keen on the extension to the house that we requested. In October 2019, she said there were no funds this year for any home improvements and that there was no money available until May of the following year and said that I would have to go on a waiting list and it was likely be 12-18 months until progress is made.

“It was a really distressing time. We fought a lot all the way down the line and I’m at a point where I can’t walk, and standing is quite hard. We got our MP, Laura Trott, involved and she was brilliant and backed us the whole way. We’re currently three weeks into the build now to create a bedroom/ wetroom on the extension downstairs so I can live on one level. It will be finished in two weeks.

“It’s been too hard for anyone to fight.

We were ready to give up twice and my builder really helped with one of those times. Jane from the MND Association was great and told me to keep going.

There have been so many barriers and it’s been so difficult to do. There’s always something getting in the way and there’s no need for that stress. There’s no way that anyone should have to go through this. I was told, ‘Don’t ever take no, you don’t have time for no. No one should ever say no to you’.”

MP’s support for campaign

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HE MP for Newport East, Jessica Morden, has spoken of her determination to get the law changed to make it easier for people living with MND and other terminal illnesses to claim the benefits they need.

At present, to access the Special Rules for Terminal Illness (SRTI) fast-track process, there needs to a ‘reasonable expectation of death’ within six months – something which is impossible to predict in people living with MND. In July 2019, the then Work and Pensions Secretary Amber Rudd promised to review the SRTI process. One year on and there has been little progress and the Association continues to work alongside our partners and a number of dedicated MPs to champion the cause with the Department for Work and Pensions.

In July, Jessica Morden proposed a 10 Minute Rule Bill on this very issue and we spoke to her to find out more.

What is a 10 Minute Rule Bill?

“They are a way for backbench MPs to try and introduce new legislation. MPs have 10 minutes to make a speech in Parliament making the case for the law change. The Bills rarely become law but are a good way of raising awareness of an issue and bringing it to the attention of Ministers.”

How did you become aware of the issues faced by terminally ill people when it comes to the fast track?

“I first became aware of the problems caused by the six month rule through the former MP and chair of the All-Party Parliamentary Group on MND, Madeleine Moon. I’ve also met with a very active local MND Association group in South East Wales run by the wonderful Judith Rice.”

What is it specifically that your bill is calling for?

“My Bill is calling for reform of the Special Rules process, in particular two aspects of the current rules. Firstly, that only those with a life expectancy of six months or less are eligible for fast-track access to benefits. Secondly, if someone is awarded benefits under the Special Rules, their benefits will stop after three years unless they submit a new claim. I believe this is unacceptable for people who are likely to be very ill.”

Why do you feel this bill should be passed?

“The word ‘terminal’ should be enough. It should not be about time, as no one can guarantee how long someone with a terminal illness will live, regardless of their prognosis. The criteria for the terminally ill need to change before more people suffer at the hands of this system.”

When you presented your Bill to Parliament on 22 July this year you made a very powerful speech and quoted Madeleine Moon. Can you tell us more about that and how

Madeleine impacted your decision to actively campaign on this issue?

“I knew Madeleine’s husband Steve, who sadly died of MND in 2015. Madeleine introduced a similar Bill to mine in 2018 and summed up so powerfully why this is such an important issue to campaign on. She said ‘The unknown time you have must not be spent worrying about accessing benefits or keeping a roof over your head; it must be spent in love, laughter, and taking the painful journey together with dignity and compassion’.”

Do you think it is important to have cross-party support for your Bill?

“I think it’s very important. Ministers are more likely to take notice if there is cross-party support and I was delighted that MPs from four different parties sponsored my Bill.”

What are the next steps with the Bill?

“The Bill is due to have its second reading in Parliament later this year. However, I hope the DWP will announce the findings from its review before then and scrap both the six-month rule and the three-year award limit.”

DIAGNOSED WITH MND? Join the MND Register to help leading researchers learn more about this disease The MND Register of England, Wales and Northern Ireland will be the first comprehensive source of information collected by experts about people living with MND and you can play a vital role in its development.

Pioneered by MND specialists Professor Ammar Al-Chalabi of King’s College London and Professor Kevin Talbot of University of Oxford, the MND Register aims to: • Collect information about people with MND, to understand more about why certain people are vulnerable to the disease • Find out precisely how many people currently have the disease and how this is changing over time • Establish where people with MND live, to help improve care in those areas • Collect detailed information about the disease to detect patterns of change in incidence and outcomes.

How to join the MND Register You can apply online at www.mndregister.ac.uk or ask about joining when attending your next clinic appointment. If you have any questions please visit the website www.mndregister.ac.uk alternatively you can email mndregister@kcl.ac.uk or call Oxford 01865 227 714 or KCL 0207 848 5258

The MND Register is funded by the MND Association and supported by the Betty Messenger Foundation and an anonymous family trust.

V1.0 22.01.19 IRAS Number 173389

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‘How a mosaic of smiling faces helped lift my spirits’ At the start of the year, few had even heard of Zoom – now it’s an integral part of our lives and an important way to communicate during lockdown. Here, Thumb Print reader Eamonn Gray, who is living with Kennedy’s disease, takes a light-hearted look at how Zoom has really helped to lift his spirits.

Eamonn Gray taking part in a call on Zoom

“U

P until the start of Covid-19, Zoom was a very nice refreshing ice lolly in the shape of a rocket, consisting of three colours.

I seem to recall that it was launched - pardon the pun - in the early 1960s.

Alternatively, it was a song by Fat Larry’s Band in 1982. Of course, you are all far too young to remember it!

“I suddenly had to wake up to the fact that it is the 21st century and it has a completely different meaning, when I received an invitation to join a meeting using Zoom with volunteering colleagues in palliative care at Colchester Hospital – HELP! “Duly downloading the app and receiving the required sign-in information and yes, a password - all supplied - I dipped my toes into the waters of the new way of meeting people, with a certain level of success.

“Then came the email that our MND Association Group was going to have a virtual meeting on 14 July – yes, you guessed it, using Zoom. ‘Panic not Mr Gray you will be fine.’

“I logged in and there were the wonderful faces of all those who had joined, obviously with more success than me. I appeared as a faceless blob in

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the corner (yes, probably the best thing!)

After some helpful hints, I appeared.

“It was brilliant to see everyone after such a long time and it did lift the spirits immediately, being able to see and hear.

“Don’t be scared of technology, someone will always help and guide you. We so want to see you at the next meeting, a mosaic of smiling faces, sharing with us all and any ideas for fundraising.”

“Carmen Brown, our new Area Support Co-ordinator, was there, at last a face to a name and she introduced herself and explained what the Association was doing in these unusual times. Ann from Neuro Rehab was there, giving us an insight into how they have had to adapt as well as Karen, Linda, Ann and Maggie, together with the dynamic double act Pauline and David.

“It gave us a chance to have a good natter, with a cuppa in hand – it was just like Through the Keyhole. There was a serious side as well, discussing how Covid had had a devastating effect on our funds. All the favourites, plus the new evening that was planned, an evening with Hugh Jackman. Settle down, not in the flesh, but a screening of

The Greatest Showman.

“Karen gave us an update on the sterling work she has been putting in, emailing and phoning various charitable trusts for grants and how she would not let the great wall of bureaucracy get in her way. As usual, massive amounts of paperwork and many saying come back to us in February, so we can consider your application before the end of the financial year. Thank you, Karen, for your determination.

“The moral of the above is that Zoom can lift your spirits (like the ice lolly and the song did) just by sitting watching a screen, seeing people you know and hearing their voice – it is a wonderful tonic.

“Don’t be scared of technology, someone will always help and guide you. We so want to see you at the next meeting, a mosaic of smiling faces, sharing with us all and any ideas for fundraising.”

For more information about Kennedy’s disease go to www.mndassociation.org/ about-mnd/what-is-kennedys-disease How has technology helped you during lockdown?

Send your stories to clare.brennan@ mndassociation.org

Golfers tee-off during lockdown

Club captain Neal Archer, junior captain Ryan Archer, ladies vice-captain Lynn Pack and longest day legend John Wright prepare for the final hole of the challenge

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EMBERS of Bramshaw Golf Club in the New Forest pulled together during lockdown to raise £6,765 with their Longest Day challenge.

The longest day challenge in June ran from 5.30am to 9pm with players clocking up 72 holes and walking more than 50,000 steps, equivalent to 26.5 miles.

Captain Neal Archer chose to support the MND Association after three members of the club were affected by MND. He said: “We thought the event wouldn’t be able to happen because of Covid-19, so when we knew it could go ahead, we only had two weeks to plan and fundraise, but everyone was looking forward to it.

“We have fundraised in different ways due to lockdown as more traditional charity fundraising hasn’t been able to happen.”

The club hosted a competition with a portion of the entry fees donated to the Association, and member John Wright, who is living with MND, sold face masks made by his wife Sal in the clubhouse.

64-year-old John, who was diagnosed with MND last November, has been a club member for nine years.

After playing the last two rounds of 36 holes in the longest day challenge, John said: “It was a good day. I have taken part in the longest day challenge for the last four years. I was just a bit sad that I could only do the two rounds and not the four, but the next day I was exhausted.

“The MND Association was an automatic choice for me. A lot of our members in the past have had MND so it is quite personal and relevant.

“The golf club is my second home now. I call it my happy place. It is like a second family. It means even more to play golf now. I was a bit frustrated during the lockdown as the weather was good, but I couldn’t play. I’m on a time limit now with my limbs. I am trying to play as much as I can. I really love it. There will come a point where I can’t do it so between now and then I want to get a few rounds in.”

“The MND Association was an automatic choice for me. A lot of our members in the past have had MND so it is quite personal and relevant.

Former captain Nigel Thomas had put the Association forward as the club’s nominated charity after his brother-in-law was diagnosed with MND. The longest day challenge was also dedicated in memory to another club member, Bob, who died of MND in February. His grandson Joe played in the event and Bob’s 76-year-old wife acted as a caddy for the final round.

Captain Neil Archer said: “MND is definitely something close to mine and the club’s heart. It’s like a big family at the club and we are very close. It’s a big community.

“The event was a lovely tribute to Bob, and it was special to support the charity for those of our club affected by MND.” The club will continue supporting the Association throughout Neal’s captaincy.

Do you know of a golf club or captain that could select the Association as their charity? Contact fundraising@ mndassociation.org for more details and support. www.mndassociation.org

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MND Register project continues during lockdown

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ESPITE the three nations being in lockdown, people living with MND have continued to join the MND Register online.

The Register is a joint project between King’s College London and the University of Oxford and aims to help researchers learn more about the disease and how it develops, identify possible trends and plan care services for people living with MND. With the coronavirus pandemic leading to the cancellation of many appointments at MND Care Centres and clinics, people living with MND have turned to the internet to help them join the Register.

Professor Ammar Al-Chalabi from King’s College London said: “While COVID-19 has meant that we have had to change the way people are able to sign up to the MND Register, we did not stop recruitment completely during the lockdown period.

Our top priority is the safety of people living with MND, and although some of our recruiting sites were able to take consent from people and collect the information we need remotely, most have suggested people join the MND Register via the self-registration website. We expect that the rate of recruitment during the COVID-19 lockdown will have slowed a little, but we aim to have all of our sites return to face-to-face recruitment into the MND Register as soon as safe and practical to do so.”

A spokesperson for the Norfolk and Norwich Care Centre said: “Unfortunately, for the time being, all of the research work that we do has had to be put on hold. We recruit people into the MND Register, as well as work with the University of East Anglia on studies that involve visiting people in their homes. We normally first discuss the MND Register with people living with MND shortly after they have been diagnosed, and we felt that it wasn’t appropriate to do this as part of a virtual appointment. But as our capacity to have face-to-face appointments increases, we will be able to return to the recruitment of people living with MND into the MND Register.”

Meanwhile, the National Institute for Health Research (NIHR) has approached the MND Clinical Studies Group to ask it to provide a list of the research projects that are priorities for faceto-face interaction. The group feels that the MND Register is an important project and has included the MND Register on the list.

For more information about the MND Register or to sign up visit www.mndregister.ac.uk We are grateful for the support of the Betty Messenger Charitable Foundation and a family trust which wishes to remain anonymous for enabling the Association to fund this important project.

Free Will services available to all members

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EMBERS of the MND Association are now able to write a Will free of charge thanks to our partnerships with the online Will-writing service, Beyond and The National Free Wills Network.

The Association is a member of the National Free Wills Network which gives members and people affected by MND the opportunity to write or amend a Will or Mirror Will in person, with a local solicitor free of charge.

While there is no obligation to leave a gift to the Association in your Will, we are always extremely grateful to all those who choose to support our work in this very personal way.

Ian Lev, who is living with MND, is one of those who has taken advantage of the free Will service.

He said: “The service was very good. We went into Barnstaple where the solicitors’ office had wheelchair access.

We spent about an hour with the solicitor and then received

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our Wills in the post. We had been wanting to make a Will for some time and this seemed an excellent opportunity!

“We have left a gift in our Will because we have benefitted from the MND Association’s support and would like to help them to continue to offer support to other families and continue to invest in research.”

You may choose to make a free Will using the online Will writing service Beyond.

In 15 minutes, Beyond will guide you through the process of putting your Will together – simply answer a few questions and they will do the rest. Each Will is checked by their in-house legal experts and then you simply print and sign.

Members in England and Wales can use Beyond free of charge by entering the code MNDA100 when prompted.

More information about both services can be found online at www.mndassociation.org/leaveagift

Care information update

New kitemark for our care information

We are delighted to announce our successful accreditation through the Patient Information Forum (PIF). This means our information process has been externally assessed and our resources recognised as high quality and trustworthy.

You will start to see the PIF Tick appear on our publications and website.

To achieve this award requires a thorough application and assessment

against 10 criteria, including use of qualified evidence and user engagement.

You can read more about the PIF Tick scheme at: www.pifonline.org.uk/pif-tick See our all of our resources at: www.mndassociation.org/publications or order printed copies from our MND Connect helpline: 0808 802 6262, mndconnect@mndassociation.org Would you like to help?

One of the core requirements to gain the PIF Tick kitemark is to collaborate with the people who use our information resources.

We work alongside people with MND or Kennedy’s disease, and their carers, to develop and improve our information.

We have lots of work planned if you would like to get involved with a range of content and formats.

You can pick and choose which tasks you want to work on and make a difference in the comfort of your own home. To find out more, contact: volunteering@mndassociation.org

Lecture will focus on respiratory care

Helping you to access the dental care you need

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T

FFECTIVE MND respiratory care will be theme of The Annual Stephen Hawking MND Lecture 2020 which is being organised by the MND Association and Royal College of Nursing (RCN) and sponsored by The Stephen Hawking Foundation.

This year’s prestigious event will be live-streamed on 25 November between 6.15pm and 9pm and will explore the relevant recommendations for respiratory care, consider how these can be applied and share examples of good practice. The lecture will be led by Dr Rónan Astin, BA Hons MRCP PhD Consultant in Respiratory and Ventilation Medicine, at University College London Hospital (UCLH).

Lucy Hawking, who is Chair of The Stephen Hawking Foundation said: “We are very proud to sponsor this namesake lecture which promotes excellence in nursing care

for patients with MND and gives crucial guidance to professional and family carers. The care of ventilated patients, whether with MND or other respiratory or neurological conditions, has never been more relevant and we hope this lecture will provide insights and information to practitioners in many related fields. We are very grateful to the RCN and the MND Association for leading the way on these issues and look forward to a fantastic and meaningful event.”

The lecture is suitable for health and social care professionals and members of the public with an interest in MND. The lecture is accredited by the RCN and is equivalent to 1.5 CPD/learning hours.

To book your free place, visit https:// bit.ly/Hawking2020.

The previous two lectures are also available to view online at https://bit. ly/HawkingLectures.

AKING care of your mouth and teeth is important, but with MND it can be challenging. Accessing dental services may become difficult, but there are ways to ensure you continue to get the treatment you need.

Regular visits to the dentist are recommended.

Some have equipment to support disabled people such as hoists or wheelchair recliners. If you can’t travel, community dental services may be able to arrange a home visit. A member of your health and social care team can refer you.

We have revised our information to support dentists. Information sheet P12 - Motor neurone disease: Information for dental teams includes details of how MND symptoms can impact on dental appointments and treatments, and practical adjustments that can be made to support people with MND to access their services.

In addition, information sheet 11B – Mouth care has detailed information and practical suggestions to help people with MND to care for their teeth and mouth.

You can find our information online at www.mndassociation.org/publications www.mndassociation.org

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Finding the right support when someone close dies

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HEN someone close dies it’s important to seek support that feels right for you. Your needs may be very different to others, even family and friends. We’re here to help.

If you have been bereaved due to MND or Kennedy’s disease, you may have been grieving from the point of diagnosis. This is called anticipatory grief and it can take its toll, especially if you have been facing the challenges of a caring role.

Getting a health check is important if you have been under pressure. Your surgery is a good place to begin seeking help, they can refer you to counselling if needed, although there may be a waiting list. If the person who died received hospice or palliative care, their teams usually offer grief support for close family members.

One former carer said, “I am so lucky to have the hospice. One and a half years since his death and they’re still supporting me.”

We provide a range of bereavement support and guidance at the MND Association and have brought together information about this at: www. mndassociation.org/bereavement Our MND Connect helpline team can help you access our information and services, and external services. They are here to support you and listen, even if you just need a chat. Our service also includes local support through our branches and groups, and in most areas, Association visitors. We also offer carer and young carer support grants, available for 12 months post-bereavement.

“I am so lucky to have the hospice. One and a half years since his death and they’re still supporting me.”

Our bereavement web page includes a list of useful organisations that provide specialist bereavement services. We work in partnership with various organisations, including those that specialise in bereavement support for example

At a Loss www.ataloss.org, which helps guide bereaved people to appropriate support services, resources and counselling.

You could also visit our online forum at https://forum.mndassociation.org where you will find a new discussion area about Living with bereavement.

This is a safe place to share support with others who have been through similar experiences.

We’ve spoken to bereaved carers and listened to your insights. There is no right or wrong way to express grief and one former carer told us that: “Managing grief is intensely personal. Your beliefs, family background and personality will all affect how you respond, including your relationship with

the person who died and those around you. You may even have young children who need support.

Our guide, Finding your way with bereavement, offers emotional and practical help. Make changes when they feel right for you. Take time to think through your choices and options, especially with major financial decisions. Above all, give yourself space to adjust. Difficult emotions are to be expected, but you are not alone. Help is available if you need support. Contact our MND Connect helpline on 0808 802 6262 or email mndconnect@ mndassociation.org

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Making every mile matter

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URING June, the Association’s fundraising team launched Run 21; a campaign to encourage supporters to run 21 miles each before Global MND Awareness Day which was held on 21 June.

“I support the MND Association because they are an enormous part of the lives of people with MND; providing financial, practical and emotional help.”

The idea really captured the imagination of the Association’s brilliant #TeamMND running community. More than100 participants took part, either running a mile each day or making up the total with a couple of longer distance runs. Together they raised more than £30,000 which was needed more than ever as traditional running events were cancelled throughout the summer.

Friends Vicky and Emma rose to the challenge after seeing a Facebook post which had been shared by their friend Ian, who is living with MND. They said: “Ian was delighted, backing us, supporting us, motivating and praising us all the way. Completing

Vicky and Emma

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the challenge involved lots of early mornings to fit the runs in around work and family commitments. But we enjoy both the running and having an hour or so in each other’s company where we could put the world to rights!”

Vicky and Emma were so inspired that they have decided to take on another challenge, Race to the Tower, a 53-mile route along the Cotswold Way. The pair added: “It will give us something to aim for and help to motivate us when we are feeling tired. It’s so easy to push fitness aside when you’ve had a long day, this will help to keep us motivated as well as raise more money and awareness of MND.” 62-year-old Jackie Wilson, from Newcastle, took part the challenge because her 35- year-old daughter Jen is living with MND. Jen, who is married with two children, was diagnosed soon after her three-year-old son was born.

Jackie, who had never run this far before within 21 days, said “My daughter was the reason I embarked on the Run 21 challenge. I support the MND Association because they are an

enormous part of the lives of people with MND; providing financial, practical and emotional help. Jen thinks it’s great that I did Run 21, and she has even donated herself and shared my JustGiving page on Facebook.”

Jackie Wilson and her daughter Jen

Jackie hopes the money raised by Run 21 will help to make a real difference in the fight against MND. She said: “I wanted to help the scientists find a treatment and eventually a cure. Hopefully the day will come when a neurologist can write a prescription that will make this disease just go away. Until then they have to keep looking for something to prevent families like ours going through this in the future.”

21 June also coincided with Father’s Day. Sarah Blewitt, whose Dad died from MND in 2012, only started running in February after downloading the Couch to 5K app. She said: “I continued to build on my progress and was averaging a total of 15 to 20 kilometres a week. It was during my first 10km run at the end of May that I decided to set myself a challenge to run 120km in June. I did this in Dad’s memory, all to raise funds for the MND Association and increase awareness of MND, as my Father’s Day gift to him.

Sarah even completed her miles in fancy dress, helping her raise more than £300.

Want to find out how you can run, and support families affected by MND? Visit www.mndassociation.org/ running to sign up for a running event or virtual challenge.

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Get fundraising back on the menu with bakeit!

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URING lockdown we all turned into a nation of bakers – even flour shortages didn’t stop us from dusting off our cake tins to help while away the hours!

One of those who used lockdown as an opportunity to cook and support others in her community was Cath Muir, who is living with MND. Together with her husband Ian, Cath was able to prepare cooked meals for people nearby who were shielding and couldn’t get to the shops.

Cath said: “Unfortunately my hands

Grea Gr ease ea se and lin i e a 1l 1lb b lo oaf a tin in..

Soakk fru So ruit it mix ix in te teaa ov o er erni nigh ni g t. gh t.

M x th Mi the eg gg, g flo l ur and d sug ugar ar intto th he fr frui uitt an ui and d te tea. a.

Ad dd to o loa oaff ti tin n an nd co c ok ok for or appr ap prox pr oxxim imat atel at elyy an hou el o r at 150 50C. C.

don’t work very well now, so I have to use Ian as my hands and arms. But we make a good team!”

Cath Muir and her husband Ian, who have been supporting people in their community during lockdown

Last year almost 200 supporters held fundraising bake sales, coffee mornings and afternoon tea parties raising an incredible £50,000 – almost enough to fund a full time Care Co-ordinator post at one of our MND Care Centres.

This year we’re relying on our supporters to hold virtual or socially distanced events, which can be just as fun. Help us to get fundraising back on the menu; visit www.mndassociation. org/bakeit for information. If you host an event, don’t forget to follow the latest government advice.

A restoration project like no other

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HEN her friend Steven Bate died from MND last August, Angela Davies was determined to restore a Romany Kite waggon in his memory.

For 18 years, Steven and Angela had worked together restoring waggons, something which continued after he was diagnosed with MND. Angela from North Wales explained: “Despite this illness, Steve still remained extremely passionate about his work, which he would later call ‘his medicine’, making daily trips up to his studios and workshops, to see his beloved waggons and directing their restoration work from his wheelchair, via his eyegaze system. His determination and ‘can do’ attitude was a constant inspiration to many around him, myself included, and his loss is greatly felt every day.”

The waggon, which Angela is now restoring, is believed to have been built in 1870 by Fuller of St Ives in Cambridgeshire.

You can see progress of the restoration here www.paintyourwaggon.co.uk

Angela and Steve pictured with the waggon Angela is restoring

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obituaries

Tributes paid to Margaret who fought MND with words and good humour

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ARGARET Cross, who her as its Royal Patron.” did so much to support Margaret and Rob met in 1963 others living with and they married two years later.

MND and the wider community They have two daughters, Alison through her online blog My Life and Carolyn. with MND, has died.

With Rob serving in the army, Margaret was diagnosed with their lives took them all over MND in 2017 and very quickly set the world including the Yemen, up the blog to enable her to write Oman, Hong Kong, Germany and honestly, and often movingly, Nepal.

Margaret and her husband Rob meeting the Association’s Royal Patron, HRH The Princess Royal in 2019 about her personal experiences Everywhere they went, of MND. Margaret immersed herself in local life, learning the She used the blog to educate people around the local language and a new way of life. world – including many medical professionals - about When Rob found a position in Hong Kong with the the realities of MND using her trademark good humour.

Queen’s Gurkha Engineers, Margaret learned Nepalese One of her first posts read: “My husband and I are very so that she would be able to speak to the Gurkha wives lucky, we have friends who understand that I don’t want and Nepal became a place close to both their hearts. In to be defined by MND, and who continue to behave 1994, Margaret was presented with a commendation exactly as before. We know there is no clinical cure, so from the Commander of the British Forces in Hong we thought we’d use humour to keep it in its place.”

Kong with a recommendation from the British In 2019, Margaret and her husband Rob attended Ambassador to Nepal for her contributions to British the opening of the North Midlands Care Network in Nepali relations. the presence of the Association’s Royal Patron HRH The Another special place was Africa, where the couple Princess Royal. spent many happy times, including a three-week Using her communication aid, Margaret was able to holiday last year. speak to the assembled guests.

Margaret died on 13 August and a funeral service was She later said: “What struck me about the Princess was held on 1 September. her obvious knowledge about MND, the charity and the A tribute fund set up in Margaret’s memory has fact that she took a lot of time talking to everyone. already raised almost £4,000 for the MND Association.

“We talked, through my communication aid, about If you would like to donate please visit https:// the problems of having lost my speech. Unlike many margaretcross.muchloved.com people, she waited for my typed responses without For more information about Tribute Funds showing impatience. The Association is lucky to have www.mndassociation.org/tribute-funds

Remembering Steve – our trustee and friend

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TEVE Parry-Hearn, a former trustee and great friend of the Association has died.

Steve, who lived in Swansea, was diagnosed with MND in 2015 and became a tenacious campaigner, turning frustration at his own diagnosis into a need to raise awareness on behalf of others.

He was elected onto the Association’s Board in 2016, serving on the care committee.

Prior to his election he said: “I refuse to be identified

by MND, but to fight it in the hope that my charge will inspire others to join campaigning for greater research.

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To empower our experts to achieve this needs funding, gaining funding needs awareness in society and in policy. I am determined to turn my own frustration at MND into proactivity by promoting greater awareness and action.”

Chair of the Association’s Board of Trustees, Richard Coleman said: “Steve was a lovely man who always made valuable contributions to our discussions, and we all admired the courage and good humour with which he faced MND. My thoughts, and those of the whole Association are with Steve’s family and friends at this difficult time.”

obituaries

“Ian was amazing, I know he will always be with us”

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AN Pratt, a much-loved Tony Bray, who helped MND campaigner and to organise the event, fundraiser, who bravely said: “After sharing many shared his story as part of hours talking both online the Association’s awareness and over the phone I campaign in 2015, has died. finally got to meet Ian Ian, from Barnsley, was for the first time in 2013 first diagnosed with MND in at the first Swimming the 2012 and worked tirelessly Solent 4 MND. It sounds to raise awareness of the like a cliché, but it was disease, appearing in as if I had known him interviews on television, forever and that was the and in newspapers and start of a great friendship. magazines. He also raised Both my family and Ian’s thousands of pounds over family have felt like one the years for both the ever since.

Association and his own “He was and always foundation, supported by will be a massive part his wife Catherine and their of the swim – it is not Ian pictured on his wedding day in 2009 young daughter, Georgiana. only in his name, but Most recently, Ian every swimmer that has appeared in a moving swum and everyone in documentary on BBC Look the future will have him North which described the by their side. He always devastating effects of MND and how it had impacted addressed them before and after every swim. His on his life. gratefulness shone through for all that they were Ian died peacefully at home on 20 May surrounded doing in the awareness and the support of MND. by his family and friends.

“He was an amazing and inspirational man and I Catherine said: “When Ian was diagnosed with am so proud to have called him my friend.”

MND our whole world fell apart, but Ian was In 2014 Ian featured on the front cover of Thumb determined. He set up the Ian Pratt MND Foundation Print, alongside his daughter Georgiana as part of to raise awareness and funds for research. He was MND Awareness Month. passionate about research and the money we raised Ian, Catherine and Georgiana also appeared on went to the Sheffield Institute for Translational ITV’s This Morning bravely sharing their story with Neuroscience (SITraN). He also wanted to support hosts Philip Schofield and Holly Willoughby and families who were going through the same millions of viewers. experiences as us.”

Catherine said: “The Foundation is Ian’s legacy One of the biggest fundraising events organised in and through it, his name will stay alive forever.

Ian’s honour was Swimming the Solent 4 MND, which Georgiana and I are doing well, in fact, she has been was renamed The Ian Pratt Challenge in 2014 and extraordinary, and never ceases to amaze me. Ian raised thousands of pounds for both the Association was the most amazing man – so articulate and and Ian’s foundation. powerful – and I know he will always be with us.”

“He was an amazing and inspirational man and I am so proud to be able to have called him my friend.” www.mndassociation.org

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Fundraisers take some Big Steps of Hope

F

UNDRAISERS from as far afield as America and India have joined forces with those from right across the UK to take part in Big Steps of Hope during lockdown.

Organised by Association trustee, Vicky Paeschel in memory of her mum Annina, who died from MND aged just 39, Big Steps of Hope was originally held last year as an outdoor event in Sheffield on what would have been her mum’s 50th birthday.

“It has been incredible to see people coming together as an online community and taking part in virtual walks wherever they are.”

This year, despite restrictions being put in place during lockdown, the event has grown even bigger with more than 100 fundraisers pledging to take part in walks wherever they are, whenever they can.

In a little over a year, a whopping 7.2 million steps have already been taken and more than £10,000 raised.

Vicky said: “It has been incredible to see people coming together as an online community and taking part in virtual walks wherever they are.

Everyone has adapted brilliantly, and it has been amazing to see all the creative and very ambitious challenges that people have come up with. We have seen everything from stair-climbing to scavenger hunts for the children, 100mile treks and people who are trying to do their 10,000 steps a day. The most important thing of all is that every step really does count and brings us closer to a world free from MND.”

Michael and his wife Jill, who took part in a socially-distanced walk with their family

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Among those taking part in a challenge was Michael, who celebrated his birthday at the Big Steps of Hope Tribute Walk in Sheffield last summer. This year Michael and his wife Jill, together with their children, daughter-in-law and son-in-law, eight grandchildren and two dogs, completed a 7km socially distanced #WalkToDFeet #MND along the Trans Pennine Trail in support of their local West Yorkshire Branch.

Fundraiser Isabel and Rosie Bear completed their #10KaDayinJuly challenge in memory of Isabel’s mum Rosemary. They have taken more than 358,403 steps to d’feet MND and raised

Isabel and Rosie Bear, who took part in a 10,000-step challenge

a fantastic £215.

Young explorer Logan took to the trail on his Big Steps of Hope #ScavengerHunt and not only found all 25 items, but raised £393 in sponsorship from friends and family.

George completed an incredible 432,840 steps over 31 days and raised an amazing £710. George took part in Big Steps of Hope in memory of his nanny Cheryl.

To find out more about Big Steps of Hope and how you could get involved in autumn events including a Halloween Walk, Leak Kickers’ walk and Moonlight Walk, visit the website at www.bigstepsofhope.com

Young explorer Logan, who raised £393

George, who completed more than 430,000 steps in 31 days

branchesandgroups

Pictured from left to right are Branch Chair, Marian Wyn Wilson; Joint Honorary Secretaries, Jean Humphries and Pat Egerton, and Neil and Jackie Roberts, owners of the Waggon and Horses pub

Free pints help to raise pounds!

R

EGULARS of a pub in Montgomeryshire were treated to free pints of beer thanks to the kind-hearted owners.

Neil and Jackie Roberts, owners of the Waggon and Horses pub in Newtown, Powys, invited their regular customers

to a free beer evening to use up leftover beer which was in danger of going to waste because of lockdown.

Members of the Montgomeryshire Branch of the MND Association were invited to take along a collection tin and bucket and were delighted when

regulars donated ÂŁ805.

The Branch’s Patricia Egerton said that they had been due to hold a Pie and Pudding evening at the pub in June but were forced to cancel. She also thanked Neal and Jackie and all their customers for their generosity.

hope A gift in your Will could give

of a world free from MND

Please help us create a world free from MND for future generations with a gift in your Will.

To request an information pack please call 01604 611898 or email legacies@mndassociation.org or visit www.mndassociation.org/wills

www.mndassociation.org

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thankyou

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.

An impressive try: James Donovan raised £1,390 by running an epic 200 miles in July in honour of his rugby role models who are living with MND. The money he raised has been kindly donated to support the South West Wales Branch.

Oliver’s an inspiration: 11-year-old Oliver clocked up the equivalent of five marathons during lockdown in memory of his Nana who had MND. Oliver, who has autism, dyspraxia, anxiety and asthma, walked 2.6 miles in his garden every day for 50 days to raise £440.

He said: “Doing the walk daily is good for my mental health. It has been a challenge, but I just want people to know you can do anything you put your mind to.

“My mum and dad are proud of me and a lot of other people, but the most important part is that I am proud of myself. When I am reading all the comments from people on Facebook it makes me feel all fuzzy inside.”

Remembering Ruby: Jeannette, Amanda, Niamh, Ellis, Leanne, Mike, Andy, Danielle and Nigel took on the Yorkshire Three Peaks in memory of their relative Ruby Browes who had MND, raising an amazing £1,056. Danielle said: “As a family we decided to take on the Yorkshire Three Peaks Challenge to raise money on behalf of the Association. Unfortunately, last July, Ruby Browes, a wife, mum, nannie and great-nannie died after being diagnosed with MND in November 2018. The Association helped massively with much needed equipment and support, not only for Ruby but for Peter her husband too.”

A close shave!: Eight-year-old Eleanor raised £1,050 by braving the chop and having her long hair cut off in memory of her grandad.

Meanwhile, Emily ScrimingerFaulkner, whose grandma and great uncle both died from MND raised £430 for the Association by taking part in a sponsored headshave. She said: “I decided to shave my head after seeing lots of others shave theirs during lockdown. I was pretty terrified, but I thought it would be a fabulous way to raise money.”

Fighting back against MND: When Mark Howard’s friend Helen was diagnosed with MND, he decided to combine his love for running with the opportunity to raise funds to support the MND Association. He took part in a Virtual Half Marathon on 13 June and raised £14,000. He said: “We went to visit Helen before lockdown and all we could do was offer a few empty words of comfort, which left us feeling useless. That sense of uselessness turned to anger at MND - it was a bit of a ‘red rag to a bull’ moment for me and I came up with the only thing I could think of which was running for the Association. Straight away I felt a sense of being able to kick back at it. I love running and the idea that I’ve been able to use it to put such a positive spin on something like this for Helen and her partner John is fantastic.”

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thankyou For NanJan: Karen Severn’s sons Will and Tom wanted to raise funds for the MND Association by running 5k every day in June, to support their grandma (NanJan) who is living with MND. They were also inspired by Ian Pratt who died from MND in June. Karen said: “During the pandemic we restricted the amount of news we watched however we did watch the coverage about Ian. The boys found it upsetting as they hadn’t appreciated how hard things might get and it suddenly made things very real. Tom decided to do something positive to raise funds for research and Will was more than happy to join him.” They set a target of £100 and both Will and Tom were amazed to see the amount on their JustGiving page exceed that, reaching more than £3,000.

Gamers ready!: When Lewis and Alfie’s dad, Aaron asked them if they wanted to join the Association’s new fundraiser, #GameOverMND, they both were keen to raise money in memory of their grandad.13year-old Lewis said: “Being asked to do a gaming challenge didn’t really need a second thought. My brother and I love playing Xbox and when Dad asked if we fancied playing for 12 hours and raise money for Grandad’s charity, we jumped at the chance.”

Aaron helped to inspire the boys after raising more than £11,000 for the Association himself. He said: “Undoubtedly Dad is looking down on them with immense pride. As long as his name is mentioned, and pictures and videos shown, he will always be with us.”

The boys had wanted to raise £100 but were delighted when their fundraising total reached £1,062.

Find out more about #GameOverMND at www.mndassociation.org/mnd-event/gameover-mnd

Miles that matter: Jane Love raised £965 by walking 500 miles in six months in memory of her friend who had MND. She completed many of the miles on her own during lockdown and was later joined by friends for some socially distanced strolls to complete her challenge.

Going the distance: Fundraisers Cathy and Duncan Haynes have done it again by virtually cycling the distance of the iconic Route 66 while safely moored on their houseboat in London. As a result of their incredible efforts, Team Haynes raised £2,000.

Making every step count: Mark Hampton ran 100k through the Peak District in just one day to raise more than £1,400 in honour of his sister-inlaw’s dad who has MND. His virtual race took just over 13 hours and he was joined by family and friends along the route, who ran alongside him for some of the way or offered support with cheers and snacks. He said: “It was a fantastic, if tiring day out and I am so pleased to have completed it.

I am so thankful to my support crew, and everyone who gave supportive messages and of course everyone who sponsored me, helping to raise more than £1,400 for the MND Association and Andy Laird’s Fightback Fund.”

www.mndassociation.org

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yourletters 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 Pease note that letters may be edited. If you are including photographs please ensure you have full permission before sending.

‘I learned a lot from Alan – and about myself – during our journey with MND’

“I

N the early days of lockdown, people kept saying to me, ‘It must be awful being in lockdown as a new widow living on my own.’ I kept saying to them, ‘I am used to not being able to do what I want to do.’

“As a carer for Alan during his 18-month battle with MND, my life was on hold.

“When lockdown first started, I must confess I didn’t think I would cope. I am a people person and have never been great at being on my own.

“Before Alan died I’d asked him what he wanted me to do with my life and he said I should, ‘Keep busy, be pampered and find a new partner.

“Alan died in June 2019. For the first six months I was in a daze. But from the start of 2020 my life began to open up again.

Before long my diary was full of trips with friends, afternoon teas, golf matches, singing in a hospice choir and holidays.

“Then, bang, Covid-19 arrived.

“The lifelines I’d been relying on to help me cope with bereavement had been cut and my world was upside down again.

“Like everyone else, all my plans and activities had to go on hold. Thankfully, those clever technology people came up with Zoom and my lovely family and friends engaged me in chats and quizzes. But it wasn’t enough. So what was I going to do to fill my time, other than rattle around in my empty house? The answer was simple. Get on with writing the book I’d started not long after Alan died. In writing the book I am aiming to raise awareness of what it’s like caring for someone with MND; raise funds for the four charities involved with Alan’s journey – the MND Association being the main recipient, plus Marie Curie, Macmillan Nurses and a local hospice, Myton. The author’s notes and advice sections will benefit friends, family and practitioners who are unfamiliar with the day-to-day of supporting a person with MND. Writing the book has been a labour of love. I have painfully relived every day of Alan’s 18-month journey.

“It’s been a difficult, emotionally draining task but also, it has helped me process what happened to us. All along I have been determined to finish it because more awareness is needed. Also, I don’t have children and nor did Alan, so I see this book as our legacy. I am aiming for publication in time for Christmas. After that, my plan is to promote it and dedicate more time to my new voluntary role, as an MND Association Campaign Contact (Birmingham and Solihull Branch) and other voluntary work

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Hazel Carter, pictured with her husband Alan

- probably with children. So, has it been awful for me being in lockdown? Not as awful as seeing my one true love being slowly taken by MND. Unlike my time caring for Alan, when there were days I felt alone and isolated, in Covid lockdown I have felt part of a universe of sufferers.

“I am mindful that more than 40,000 families have been thrust into my world of bereavement due to Covid.NHS and key workers have given completely of themselves – many will have been pushed to breaking point. As Alan used to say, ‘There is always someone worse off than me.’ I learned a lot from him. I learned a lot about myself during our MND journey. That journey changed me. Covid has changed everything for all of us. In a strange way it has helped me grieve and helped me focus on others.”

To register your interest in being informed about the publication of her book, please write to Hazelcarterauthor@ outlook.com Hazel Carter, via email If you have a lost a loved one and need help and support, please turn to pages 14 and 15 for the latest information.

‘I will always look back with sadness, but with so much pride’ – pages 12 and 13

aboutus

A letter from lockdown

“I

’m Deb. I’m 58, married with three sons aged 21, 19 and 17 and we live in Leeds.

“Having lived with MND for the past year, I’ve found lockdown to be a leveller - everyone is restricted in what they can do. With MND you learn how to swing the direction of your thoughts back to the present - don’t dwell on what you can no longer do, don’t think too far ahead.

“I think my boys have had the toughest time. The need for their friends and those summers between sixth form and university are so special. The uncertainty about what lies ahead for them. Having to navigate through it all with the pressure to keep us safe. The eldest son in his final year at university, finished without the proper ending, no goodbyes.

“The MND nurse specialist phoned early on to catch-up and explain how things would be for the foreseeable future; no visits or MDT clinic appointments and that her role as my single point of contact would be transferred to the physiotherapist when she was needed to work on the Covid wards. There would still be someone on the end of the phone. Thankfully, the regular sessions with a psychologist continued by video.

It seemed very sensible but was strange to listen to and I could only imagine how difficult that plan was to enact by the healthcare team.

“At first, I wasn’t on the extremely vulnerable list as MND isn’t mentioned specifically. I was shocked at how personal and discriminatory that felt. I self-registered as extremely vulnerable – not because I needed help, but rather to not be ignored.

“It was an anxious, stressful time. I had chosen to self-isolate quite early before the official restrictions as Covid was obviously very risky. Having spent my working life in an acute NHS hospital, and now as a palliative patient, I was uncomfortably aware of the triage priorities.

“Of course, Plan A was not to get the virus, so my husband and I strictly isolated using a camper van parked

outside the house. Our retirement plans had always been to buy a camper and travel once the boys were up and off.

Amid the chaos I felt safe. Being in there enabled two of our boys to come home early from university and quarantine.

After 14 days of restrictions all felt calmer and we started sleeping in the house.

The camper van remained ready to move back into as my ‘insurance blanket’.

“Initially, I couldn’t get my usual online delivery, I contacted local businesses who delivered, and friends helped.

“We’re fortunate to have a decentsized garden with trees. I’ve always loved nature but have found I really see the beauty in it all now. It’s hard to explain the pleasure I get from just looking at nature. A chair by the apple trees, birdsong, a gentle breeze, and the breath-taking beauty of the apple blossom.

“My boys had 21st and 17th birthdays in May. I was worried about how we could make it special for them. In fact, our plans created a special time that the 21-year-old declared the ‘perfect day’.

“I think the challenging time for people like me and our loved ones is now, when the restrictions are easing, and the virus is still around. The extent to which we isolate will be a deeply personal decision.

“There have been many highlights the kindness of friends, the birthdays, our eldest son completing his dissertation, the phone call from Leeds Rhinos checking I was OK, the help of the local Covid action group/MP in replacing our washing machine, an experienced Occupational Therapist who knew just what I needed, a friend’s weekly quiz, my brilliant GP who sorted a video link for future arrangements when neither of us had done that before.

Mostly, time at home with close family.

And what of my future plans? Well, like everyone else we’ve had a rethink, we intend to continue using our own judgement. I have a virtual graduation celebration to attend and one other thing’s certain - I’ve got time arranged with a couple of apple trees.

Deb Mercer, via email.

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. http://forum. mndassociation.org mndassociation mndassoc mndassoc

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

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

0808 802 6262 mndconnect@mndassociation.org Membership To receive a regular copy of Thumb Print, call 01604 611860 or email membership@ mndassociation.org If you would prefer to receive your copy of Thumb Print under plain cover please let our membership officer know.

Call 01604 611860 or email membership@ mndassociation.org

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

www.mndassociation.org

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