Thumb Print - Summer 2020

The magazine of the Motor Neurone Disease Association

Summer 2020

Always together How we’re uniting to support people living with MND

For mND

GAZE COMPATIBLE

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, part of the

family

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The Princess Royal sends a message of support Our Royal Patron thanks our supporters for their efforts during the coronavirus crisis

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Fighting for a world free from MND – in lockdown How research has been continuing during the pandemic

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Caring for our carers How the Association is working hard to support those who care for loved ones with MND

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Finding new ways to fundraise!

Our supporters take on the challenge of raising money during lockdown

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Extending a hand of friendship How the Association came together to mark Global MND Awareness Day on 21 June

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I know Grandpa would be proud of me MND Buddy, Catherine, shares her story with Thumb Print

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: A selection of images of members of the MND community who continue to support our work.r.

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…

In recent weeks my thoughts, and those of everyone at the Association, have very much been with people living with MND and their families.

With so many of you already coping with the devastating effects of MND, I know the coronavirus pandemic will have brought with it a fresh wave of concerns – some of which would have seemed unimaginable just four months ago.

I also know that very sadly, some of you will have lost loved ones and friends and our thoughts are with you and your families at this difficult time.

From the start of the pandemic, the Association has been determined that no-one living with MND should have to face this crisis on their own.

We acted swiftly and decisively, getting in touch with people who we know are living with MND to offer guidance and support.

Working alongside a panel of experts, we have been able to respond to an ever-changing and complex situation, providing updated information on our website and by hosting regular Ask the Experts sessions online.

Thanks to the very generous support of the My Name’5 Doddie Foundation, led by former Scotland rugby international Doddie Weir MBE, who is also living with MND, we have been able to offer Emergency Support Grants, which have helped to give some reassurance in troubling times.

Our helpline MND Connect has responded to more than 1,505 calls from people living with and affected by MND and our brilliant volunteers across England, Wales and Northern Ireland have continued to offer support where they can – keeping in touch with people living with MND through regular phone calls and emails and through chats on Facetime and Skype.

At the same time, our incredible fundraisers, donors and supporters have continued to rise to the challenge, coming up with increasingly creative ways to raise money, even during lockdown. We couldn’t be more grateful for your generous support.

In the months that follow, there will be much for us to learn about our response to the pandemic and changes the Association can make to ensure the legacy we take forward is a positive one.

But for now, our priority will remaim the same – to ensure that people living with MND and those closest to them continue to have the support they need at this difficult time.

Sally Light Chief Executive

www.mndassociation.org

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CORONAVIRUS UPDATE 4

Royal Patron sends a heartfelt message of thanks

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HE Association’s Royal Patron HRH The Princess Royal has thanked its volunteers and supporters for coming together to support people living with MND during the coronavirus crisis.

In a message sent to the Association at the start of lockdown, the Princess acknowledged the difficulties people living with MND are facing and spoke of her support for the Association’s work during the pandemic.

The Princess said: “As I have had to postpone my visits for this spring and summer, I did just want to record how much I appreciate the difficulties you all face over the next few weeks and months. Many of you will have found ways to adapt your skills, which are so important to the organisations you either work or volunteer for, to help in your own isolation or to help others cope better in those many jobs which cannot stop. Thank you for all you do.”

Since March, when the UK went into lockdown, the Association has been working hard to reduce the risk of spreading the virus and provide support to people living with and affected by MND and Kennedy’s disease at this difficult and very worrying time.

By the middle of April, the Association had written to 4,108 people with MND on our database to offer our support and called all of those whom we have permission to contact – important work which is on-going.

Branches and groups across England, Wales and Northern Ireland have also been doing amazing work in their communities, regularly meeting with members online.

“As I have had to postpone my visits for this spring and summer, I did just want to record how much I appreciate the difficulties you all face over the next few weeks and months. Many of you will have found ways to adapt your skills, which are so important to the organisations you either work or volunteer for, to help in your own isolation or to help others cope better in those many jobs which cannot stop.”

Sam Tooze, who is living with MND and leads the Coventry and Warwickshire Branch of the Association, said meetings online had been hugely successful.

She said: “It’s certainly going to be the way forward until things change. Right now, the main thing is keeping people living with MND connected

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The Princess Royal visits the Café Neuro drop-in service in Barrow-in-Furness, on behalf of the MND Association, in January 2020

and to let them know that we are here for them while we are going through this pandemic. Meeting online allows us to share our ideas as normal.”

During the crisis, the Association has also distributed Emergency Support Grants to people affected by MND, thanks to former Scotland rugby international Doddie Weir MBE, who donated £70,000 to the Association through his My Name’5 Doddie Foundation.

One of our members, who has received an Emergency Support Grant, said: “Receiving a grant from the My Name’5 Doddie Foundation has made a difference because my husband is currently being furloughed and we are unsure of what the future holds. This will help us with our expenses as we are really struggling. We thank you for the consideration and the swiftness to help us in this dire time.”

Support and information can be found on the Association’s Coronavirus Hub which is available at www.mndassociation.org/coronavirus.

When it matters most, we’re here for you Since the start of the coronavirus outbreak, the Association has been working hard to make sure that people living with MND have all the information and support they need. Here are just some of the important projects we have been working on since March. We have...

Written to all 4,108 people with MND on our database to offer support

Shared a series of Ask the Experts sessions online

Mobilised 240 volunteers to engage with people affected

by MND

Distributed 69 Emergency Support Grants worth ÂŁ16,666 Provided information and support to 173,407 people via our website at www.mndassociation.org

Called all of the people with MND we have permission to phone Responded to 1,505 calls to MND Connect

Kept in touch with our members through social media and Thumb Print

Engaged a wide range of health professionals to support our work

Created an animation to help people living with MND understand more about the effects of coronavirus www.mndassociation.org

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Doddie steps up support for people living with MND Doddie Weir OBE

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HE foundation set up by former Scotland rugby player Doddie Weir OBE has donated £70,000 to support the Association’s work during the coronavirus pandemic.

Doddie, who was diagnosed with MND in 2017, set up the My Name’5 Doddie Foundation, to campaign and fundraise on behalf of people living with the disease. Since then, he has been a generous supporter of the Association’s work, contributing £100,000 this year alone to our grant scheme.

With people with MND in the highrisk category for coronavirus, Doddie has

now increased his support even further to ensure people with MND have the care they need.

“We have been working really hard to ensure our vital work supporting people with MND has continued during the pandemic.”

Doddie said: “Right now is a very worrying time for us. I am determined to do as much as I can to help alleviate some of those concerns. The money will be used by the MND Association in England, Wales and Northern Ireland and by MND Scotland to shore up the

support they are offering people with MND at this time.”

The Association’s Chief Executive, Sally Light, said: “We have been working really hard to ensure our vital work supporting people with MND has continued during the pandemic. At the same time we have seen a dramatic fall in our income following the postponement, and cancellation, of so many key events in our fundraising calendar. We are so grateful to Doddie for this donation which will enable us to continue and step up our support to people living with MND at this very worrying time.”

Meeting discusses coronavirus impact

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HE impact of coronavirus on the MND community was discussed by the All-Party Parliamentary Group on MND in June.

Chaired by Andrew Lewer MBE MP, the group’s first online meeting was attended by Science Minister, Amanda Solloway MP, the Association’s Chief Executive, Sally Light and Consultant Neurologist, Professor Ammar Al-Chalabi.

Other attendees included representatives from the My Name’5 Doddie Foundation and MND Scotland. Association patrons Baroness Finlay of Llandaff and actor Eddie Redmayne OBE both asked questions on behalf of people living with MND and the 1,300 supporters who

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took the time to write to their MP to tell them about the meeting. As a result, a record 42 MPs and Peers took part. David Setters, who is living with MND, also asked a question on behalf of himself and Lee Millard.

During the meeting, Jessica, whose husband Shaan is living with MND, spoke movingly about how the coronavirus outbreak has affected them.

She said: “I am struggling with providing all Shaan’s care, as well as looking after our four-year-old. I am a strong person and we have been through a lot in recent years, but the physical and mental strain is bringing me to my knees. All the lifting, all the

communication challenges and all the sleep deprivation – Shaan needs help throughout the night as well. I barely cried across the four years since Shaan’s diagnosis as I’ve been so busy, but now I am breaking down in tears of exhaustion every few hours.”

Following the meeting, Andrew Lewer MP and Sally Light have jointly written to the Science Minister seeking a meeting to discuss Government support for MND research.

You can watch Jessica and Shaan’s video on our website at www. mndassociation.org/virtualappg or for more information about the APPG follow them on Twitter: @APPGonMND.

6,000 campaigners join fight to Get MND on the List

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ORE than 6,000 supporters joined the Association’s campaign to Get MND On the List.

Launched in April, the campaign called on the Government in Westminster, the Welsh Parliament and Northern Ireland Executive to add MND to the list of conditions which make people extremely clinically vulnerable during the coronavirus crisis. The list enabled vulnerable people to access certain protective measures such as priority supermarket deliveries.

Within days, an incredible 6,290 supporters, 120 MPs and 40 clinicians mobilised and joined the campaign, making it one of our biggest yet. Former Scotland rugby international Doddie Weir OBE, who is living with MND, got behind the campaign, releasing a video on Twitter which received 12,000 likes, attracting the attention of the Department of Health which agreed to discuss the situation with the Association.

Thanks to the efforts of our campaigners in Northern Ireland, the Northern Ireland Executive agreed to add people living with MND to the list of vulnerable people. Sadly, despite incredible support from the MND community, on May 12, the Deputy Chief Medical Officer’s office confirmed that the UK Government’s position would remain unchanged. The Welsh Parliament also confirmed that it would not be adding MND to the list.

Despite this obvious setback, the Association continues to

do everything possible to support people living with MND throughout this difficult time. We continue to work with the Department for Environment, Food and Rural Affairs and the Department of Health and Social Care regarding the support available to the wider vulnerable group. The priority is to ensure that anyone who is not registered as extremely vulnerable can still access the help they need. We are also working directly with supermarkets to secure delivery slots for people living with MND. For more information about the help available please visit our coronavirus information hub at www.mndassociation.org/ coronavirus

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Tel: 0161 793 5934 Doddie Weir OBE released a video calling on the Government to Get MND on the List

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www.mndassociation.org

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The fight for a wor i continues – eve

HEN the country was forced into lockdown, research laboratories, like many other places of work, temporarily closed. Here, two leading researchers explain how they have had to adapted work to ensure that research into MND can continues – even during a global pandemic.

Dr Jemeen Sreedharan, Neuroscientist and Neurologist at King’s College London, uses cutting-edge approaches to understand the causes of MND. His research focuses on an important protein called TDP-43, which plays a role in almost all cases of MND, aiming to find ways to correct it to healthy levels in the brain’s cells.

Jemeen was formerly one of the Association’s Clinical Scientist Fellows, funded in partnership with the Medical Research Council (MRC). He now has a grant from the MND Association for a biomedical project, which aims to identify targets for therapy that will be relevant for the majority of people who are living with MND. “In the middle of this horrifying and paralysing COVID-19 pandemic, how are we supposed to continue working to find a cure for MND? “MND research is so important to us all, and we do not want to it stop. We will continue – while adapting to the limitations brought upon us by the need to physically distance.

“Communication – verbally, virtually face-to-face, or by email – is all important during lockdown. It is important to maintain strong ties, and digital means such as Skype and Teams are integral to this. So my lab members and I communicate on Thursday afternoons at 3.30pm just as we normally would face-to-face, presenting thoughts and ideas and planning our return to the laboratory. We still talk to each other regularly to ensure we are always moving forward.

“MND research is so important to us all, and we do not want to it stop. We will continue – while adapting to the limitations brought upon us by the need to physically distance.”

“We have much work to be done, even if we cannot conduct the human stem cell and mouse studies that we perform in our normal routine. We have been generating lots of interesting results over the past year and we have an opportunity to put these observations together. This is a time to reflect on our progress so far, anticipate where we should go next and plan accordingly. Such processing is normally done on a small scale on a daily basis when time permits, but now having downed our tools, we can put more effort into thinking, which is an underappreciated part of our job as scientists. Indeed, we have already

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Dr Jemeen Sreedharan

come up with some interesting ideas as to how to take our research forward. We are designing follow on experiments and analysing existing data in novel ways.

“As well as writing my own manuscripts, I have also been invited to review a number of manuscripts and grant applications from other groups. This is a major part of our role as MND researchers, not just producing results, but guiding and working with others in their own studies to accelerate progress towards finding a cure. And what about funding? We are all worried about this, but this pushes us to come up with even more clever ideas that are more likely to stand a good chance of funding in future. We are preparing.

“And then there are our patients. I still ‘see’ my patients in the motor nerve clinic at King’s College Hospital, but consultations are now mostly over the phone or by video link. Patients are vulnerable at this time more than any other and we need to be

orld free from MND ven in lockdown there for them. The multidisciplinary clinical team at King’s is working hard to ensure everyone is kept safe and feels secure.

One of our major clinical trials (gene therapy for C9orf72) is still very active and we just recruited another two patients last week. When this crisis passes, we will celebrate.”

Professor Nigel Leigh is a Professor of Neurology at Brighton and Sussex Medical School and honorary consultant neurologist at Brighton and Sussex University Hospitals Trust. In 1989, he established a research programme in MND at King’s College London to understand the causes, mechanisms, and treatment of MND. This became the first UK MND Care and Research Centre to be funded by the MND Association. He co-leads MIROCALS (Modifying Immune Responses and Outcomes in ALS), a clinical trial of low dose interleukin-2 with extensive biomarker studies, funded through the EU Horizon 2020 programme, in partnership with the MND Association. He is Director of the Sussex MND Care and Research Network and continues his links and collaborations with King’s College London as Emeritus Professor of Neurology.

“The most significant challenge we have had to overcome, is not being able to see the patients face-to-face.

“Our patients have been the real heroes in all of this and have been incredibly understanding. We have moved consultations to phone and video conferencing, but it is no substitute for face-toface contact.”

“We were very lucky that when COVID-19 hit all the main investigations in the latest part of our MIROCALS trial had been concluded and most of the remaining lumbar punctures, which allow us to take spinal fluid from our patients, had been completed. The important thing here is that the integrity of the trial has not been undermined and we will end the trial with solid data and a unique resource of blood and spinal fluid samples.

“Our patients have been the real heroes in all of this and have been incredibly understanding. We have moved consultations to phone and video conferencing, but it is no substitute for face-to-face contact. “We are taking everything week to week and following the advice we are given by the Government, but we are confident that the study will finish as planned in a year’s time.”

To read more updates on the work of MND researchers and how they had been impacted by the COVID-19 pandemic, please visit https://mndresearch.blog where you can find a series of blogs and videos from early career MND researchers.

Professor Nigel Leigh

www.mndassociation.org

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Expert help at “When someone was newly diagnosed before the lockdown, we would see them at home for a first visit. I don’t think that’s something we will stop post-lockdown, even with increased remote consultation for follow ups. A visit helps you get to know the person and family and see how accessible their home will be.”

Tracy Thomas Lead Clinical Nurse and Co-ordinator at the Peninsular MND Care Centre Network in the South West of England.

“As the rules relax we’ll be allowed to do more things. But the virus hasn’t gone away. Talk with those close to you about what’s most important to you, and if you’re going out or meeting other people, do the basics – wash hands properly, keep a safe distance if you can, think about how to stay safe. You’ll want to know the risks, and good information from the MND Association or your health care team will help you decide what’s right for you.”

Dr Idris Baker Consultant in Palliative Medicine, Swansea Bay University Health Board.

“Our hospital has helped a huge amount of people with coronavirus during the pandemic and I’ve been really amazed at how adaptive everybody is, but also how willing colleagues have been to have conversations on the side, ‘Can I just ask you about an MND patient? What could we do?’ The generosity of spirit has been amazing, not just in the MND team, but the wider team as well.”

Jan Clarke Consultant MND Nurse at the National Hospital for Neurology in Neurosurgery, and Co-ordinator for the MND Care Centre at the National Hospital, London.

“This pandemic has demonstrated how flexible the NHS can be. We must now turn this into a postive change to help and support people affected by MND.” Dr Nikhil Sharma Consultant Neurologist and Co-director of the MND Care Centre at the National Hospital, London, and Trustee for the MND Association.

“We’ve fortunately been able to video-call our patients from home. It’s been set up securely, using the Secure Health Records Network.”

Pauline Callagher Lead MND Specialist Nurse and Co-ordinator at Preston MND Care Centre.

“From the start of this pandemic, MND specialists have worked together even more closely and spoken in one voice to support our patients and their carers during this difficult time.”

Aleksandar Radunovic Consultant Neurologist and Director of the Regional Motor Neurone Disease Centre at Barts Health NHS Trust.

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NDERSTANDING the urgent need to provide expert answers to your queries during the pandemic, back in March we extended an invitation to a team of neurologists and clinical specialists to join an expert panel. The response was amazing.

Despite the additional NHS pressures and the need to provide continuing support for people with MND or Kennedy’s disease, clinicians have been keen to offer their help. Professor Chris McDermott at Sheffield Institute of Translational Neuroscience said: “Initiatives like this, to get information out to patients and explain what the coronavirus crisis means to them, are very helpful.”

Different experts have been involved and we will be inviting more in the future. They have attended the panel, taken part in our Ask the Experts videos and helped to review information.

With their guidance, we have been able to provide qualified content on our coronavirus web hub. Professor Ammar Al-Chalabi at King’s MND Care and Research Centre said: “Sometimes medical events unfold rapidly and knowledge is limited, as was the case with this coronavirus outbreak. In these situations, clinicians can help fill in the gaps, interpret the evidence available, and access information that might be less visible to the general public.”

Clinicians have also been fielding many questions from MND patients during the lockdown. Tracy Thomas, Lead Clinical Nurse and Co-ordinator at the Peninsular MND Care Centre

a time of crisis We would like to thank all our experts and everyone in the NHS for their support and dedication.

Your work on the frontline is much appreciated by us all.

Network, said: “At first, we were asked things like, ‘How do I get shopping if I can’t go out? How do I get my bloods checked?’.

But the difficult questions were around ‘What happens if I get the virus?’ and choices on whether people would want to be hospitalised.”

We’ve explored a range of concerns with our experts, including questions about the virus, hospital care and admissions, care in the home and how to respond to changing government guidelines. This has included lobbying with MPs on the issue of shielding and pushing for MND to be recognised under the extremely vulnerable status.

The UK is helping to lead the way with solutions to the virus and Professor Martin Turner at Oxford MND Care and Research Centre said, “Progress has been astonishing. There’s no single greater issue globally – it’s easily the biggest mobilisation of scientists ever. I’m confident answers will come quickly and not in the normal timescale, which can take years of research.”

The discussions and information provided by the panel have been really insightful, particularly taking into account this is a previously unknown virus which has spread so quickly.

Watch our Ask the Experts videos at: www.mndassociation. org/videos/ask-the-experts and visit our coronavirus web hub at: www.mndassociation.org/coronavirus If you have any further questions, contact our MND Connect helpline team on 0808 802 6262 or email mndconnect@ mndassociation.org

“Most of the diagnosis process doesn’t come from examination, it comes from the story that person tells us.

Much can be done remotely, although it may take more time to arrange a physical examination at the moment…

But we can mitigate most of the problems of not seeing someone in person.”

Professor Ammar al-Chalabi Professor of Neurology and Complex Disease Genetics and Director of King’s MND Care and Research Centre, King’s College London.

“The coronavirus outbreak has provided scientists and clinicians from various fields with a unique opportunity to collaborate, which gives you the sense that everyone is working together in an expanded team for the greater good.”

Dr Ahmad Al Khleifat Institute of Psychiatry, Psychology and Neuroscience, King’s College London.

“People living with MND and their carers have shown a great deal of resilience during the crisis, which has helped them to keep safe, despite the many challenges. The response from the MND Association on coronavirus has been informative and also reassuring to many.”

Jennifer Rolfe MND Specialist Occupational Therapist, Neurosciences, John Radcliffe Hospital, Oxford.

“The most important thing during this pandemic is to take sensible precautions, for example, paying particular attention to hand washing and wiping down anything that’s been brought into the household.”

Professor Chris McDermott Professor of Translational Neurology and Consultant Neurologist at Sheffield Institute of Translational Neuroscience (SITRaN) and Co-director of Sheffield MND Care Centre.

There’s an enormous amount we can do over the phone in the coming months, talking to community teams and new solutions for more tricky problems.”

Professor Martin Turner Professor of Clinical Neurology and Neuroscience and Director of the Oxford MND Care and Research Centre.

‘Weekly access to experts has been tremendous for the Association most importantly to answer questions from people affected by MND. The success of this group has helped us learn so much during the pandemic and we will continue to utilise experts going forward. We are looking to expand this model across other areas of health and social care to support people affected by MND and by Kennedy’s disease.”

Nick Goldup www.mndassociation.org

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How we are carin C

ARING for a loved one who is living with MND is a difficult and emotional experience at any time, but for many during lockdown, life has become even more challenging.

As part of the Association’s response to coronavirus, our staff and volunteers have been in touch with more than 4,000 people who are living with MND and their carers to offer help, support and guidance.

During those calls, carers have raised a number of important issues. These have included concern about how coronavirus could affect their loved one, difficulties to accessing vital services such as shopping deliveries and frustration getting hold of personal protective equipment (PPE). Some have expressed worries about their own mental health and well-being.

Wendy Jones cares for her husband Mel, who was diagnosed with MND in 2013. In the last two or three years he also developed frontotemporal dementia (FTD).

“The beauty of the group is that there is no set agenda and no set discussion topics. It is just a safe place where carers can chat and share experiences and knowledge.”

She explained: “Early on it was so stressful, I was really panicking thinking who would look after Mel if I got ill? At first the care staff didn’t have any PPE. My son got hold of hand sanitiser which I asked them to use before they came in the house. It’s only this last week (end of May 2020) that they’ve started to be tested. We know the care agency has a Covid patient, and one of the carers tested positive. It was extremely worrying for us. It can be different carers coming through the day, having been to other people’s houses in between. That’s a lot of DNA coming through the house.

“I’m feeling a bit more relaxed now than I was at the start of lockdown. I’m pretty isolated anyway, as I’m with him 24/7, so unless I get respite care I can’t go out. What’s bothered me most is not seeing the family, especially the grandchildren. It took four weeks to get deliveries sorted from the supermarket.

Early on in lockdown my son or daughter would come and drop the shopping off. It’s only been the last couple of weeks that they’ve brought the grandchildren over to see Grandad – he hadn’t seen them for nine or 10 weeks. That’s been the hardest bit as they used to come every weekend. He idolises them and they love to see him, so it’s been very hard on them too. He doesn’t understand why they can’t come in and why they have to stand at the door. We tell him about the situation, but within 10 minutes he’s forgotten and goes back to asking why they’re outside.”

Making sure carers have the support they need to cope during the coronavirus outbreak has been one of the Association’s biggest priorities and in recent weeks we have introduced a number of new initiatives to help including:

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Wendy cares for her husband Mel, who was diagnosed with MND in 2013

• Setting up virtual peer-support groups for carers • Developing online events and short videos for carers to promote wellbeing • Exploring further use of social media support • Offering carers’ grants In North Wales, the Association is currently offering a fortnightly, carers telephone support group meeting. The meetings are held by phone rather than by video as carers felt this would offer them greater flexibility to be able to join in.

Meetings are not geographically restricted, so carers from all over Wales are in touch with each other.

The Association’s Area Support Co-ordinator (ASC), Jo Cunnah, said: “The beauty of the group is that there is no set agenda and no set discussion topics. It is just a safe place where carers can chat and share experiences and knowledge.

Sometimes there are a few tears but mainly there is laughter

ing for our carers Online letter highlights the issues our carers face

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and it has been lovely to see it grow into a very friendly and supportive group that welcomes new participants with open arms.”

One carer said: “I was worried I would find the idea daunting, never having tried anything like this before, but I decided to give it a go. I’m so very glad I did, because prior to making that call, I felt very much alone in my caring role looking after my 85-year-old mum with MND. I am now looking forward to our next chat together in two weeks’ time.”

For the latest information about coronavirus, visit the Association’s coronavirus hub at www.mndassociation.org/ coronavirus. Information for carers is also available by visiting www.mndassociation.org/support-and-information.

Do you have a story to tell about life during lockdown?

Contact editor, Clare Brennan at clare.brennan@ mndassociation.org

N the days and weeks leading up to Carers Week in June, the Association encouraged its supporters to #supportMNDcarers by signing an open letter to Parliament and sharing their experiences of caring for loved ones who are living with MND. The letter urged the UK Government, the Welsh Parliament and Northern Ireland Executive to give carers the help and support they need to care for people living with MND throughout the crisis. It highlighted improved access to testing and PPE, an increase in the Carers Allowance and clear guidance to help protect unpaid carers and those they care for as lockdown restrictions are lifted. After receiving an amazing 3,081 signatures, the letter was delivered virtually to the UK Government, the Welsh Parliament, and the Northern Ireland Executive on 11 June by the Association’s Chief Executive, Sally Light.

In addition, during the pandemic, the Association has been working with the Wales Carers Alliance to ask the Welsh Parliament/Senedd Cymru to recognise the needs of carers and prioritise their support. We have also called on the Northern Ireland Executive to take action by contributing to the statement The impact of COVID-19 on carers in Northern Ireland.

In response to the online letter, the Welsh Parliament said: “We recognise the challenges that people living with a neurological condition including MND face and the impact it has on carers, friends and families, especially in the current situation we find ourselves in. Over the past few months concerns have been raised about accessing services and as we move into the recovery stage of the pandemic the Neurological Conditions Implementation Group will review the concerns raised, identify gaps in services and share best practice/new ways of working.”

As Thumb Print went to press, the Association had not received a response from the UK Government or the Northern Ireland Executive.

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The McCarroll family

Michelle Lowe

Corinne Vaughan

Abby Fitts

Catherine Wood

David Nolan Kate Perceval Matthew Julier

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Lily, four, is one of our 2.6 Challenge fundraisers

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HE 2.6 Challenge – a national fundraising initiative set up to support charities affected by the coronavirus crisis – has inspired 89 fundraisers to raise more than £38,000 on behalf of the MND Association.

Once again, our incredible fundraisers have risen to the challenge of raising money during lockdown, creating their own unique events inspired by the numbers two and six.

One of our youngest fundraisers was Lily Withers, aged just four, who took on a sponsored scoot.

Lily clocked up 2.6 miles in memory of her Grandpops who died of MND. Her mum Amy said: “As a family we have always supported the MND Association since I lost my dad, Lily’s Grandpops, to the disease in 2013. It saddens me that they never got to meet each other, but he would be so proud of her. She has his determination.”

The McCarroll family clocked up a marathon in their back garden by running Lily Withers 4,140 lengths between them.

The team was made up of mum and dad Christian and Linda and their children 11-year-old James, 10-year-old Jake, eightyear-old Ryan and six-year-old Lucy.

Linda said: “I wanted to raise money for the charity as they have provided my mum with so much support since her diagnosis 18 months ago. The best bit of the challenge was watching the children pushing themselves to keep going to the end.”

Abbi Fitts was joined on her 2.6 challenge by her dog Harlie and the loved ones she is living with in lockdown, Billy, Emily and Helen.

The team walked more than 6.5 miles each together to complete a combined total of 26 miles in memory of Abbi’s father-in-law who had MND. She said: “We lost my father-in-law to MND back in June 2017 at the young age of 49. He battled the disease for five years and watching him suffer and be unable to do things was awful. I will continue to spread awareness of the charity and raise funds where I can in his memory, and for all those people and their families who continue to suffer. I’m praying that one day there will be a cure for MND.” Support came from as far afield as the Spanish city of Barcelona when Victoria Vasiliou hoola-hooped for two-and-ahalf hours to raise funds in memory of her granny who had MND. Eight-year-old Catherine Wood took part in memory of her Grandpa when she ran 26.2 laps of her family’s allotment,

covering just over a mile in total.

Catherine, who has previously made and sold bracelets, toys and cakes to support the MND Association, wasn’t able to attend her Grandpa Chris Wood’s funeral as it took place the day after lockdown restrictions were imposed.

Her mum Claire said: “The very last message that I received from my father-inlaw a couple of weeks before he died was, ‘She is amazing!’ when I told him about the items Catherine had been making and selling in order to raise money for the MND Association. I think he would have been very proud indeed of her run.”

Suzanne Despard set herself a creative challenge to write 26 poems in a day, each one beginning with a different letter of the alphabet.

She filmed herself reading each poem and shared them on her Facebook page to raise funds in memory of her mum and friends who have been affected by MND. Partners Corinne Vaughan and David Nolan ran 26 laps of their street to clock up a half marathon each in honour of their family friend who is living with MND. Michelle Lowe cycled 26km on her exercise bike as part of her training and fundraising for the Thames Bridge Trek in September in honour of her dad who is living with MND. Four siblings completed a virtual cycle from their own homes in memory of their mum. Lara and her partner Greg in London, her sister Anya and her partner Sam in Leeds and brothers Sam and Leo, both in Hampshire, all cycled 26 miles.

Lara said: “We miss our mum more than we can put into words but her warmth and love for life continue to inspire us every day.”

The Perceval family also clocked up the miles with dad Chris cycling 26 miles while mum Kate ran 2.6k with her sons Tom, 18 and Will, 18 in a three-legged race, all in memory of Kate’s dad.

We even had a world record attempt when Matthew Julier took on a two-and-a-half hour tethered swim challenge.

Matthew was tethered to a bungee cord in his pool for the challenge in memory of his father Derek.

He said: “My Dad would think I was crazy - which I clearly am! I am lucky enough to be fit and healthy and have always wanted to push the boundaries of what my body is capable of as you just never know when it can be taken away from you we must find a cure.”

Turn the page for more of your amazing fundraising stories.

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You’re amazing! – Lockd F hard to clos ROM virtual quizzes to garden marathons, head shaves to stair climbs, bike rides to walks, our amazing fundraisers have raised more than £600,000 for the Association during lockdown.

University lecturer Dr Tony Gill celebrated his 58th birthday with a 100-mile cycle on his turbo rollers in his garage. He cycled for seven hours to raise funds in memory of his mentor who died of MND. Tony, who works at Salford University, said: “In this difficult time of social isolation many people face hardship and difficulty but none more so than those who rely on fundraising donations such as those with MND. Many charities have had fundraising activities cancelled and contributions have dropped, so we need to help in some way.”

Meanwhile 22-year-old student Ned NicholsonSmith kept himself busy creating a Quarantine Quiz Tony Gill after his university course was interrupted due to coronavirus. Ned created a series of puzzles inspired by family friend and quizmaster David Rowney who died of MND last year.

David used to create a quiz every Christmas for family and friends to enjoy over the festive period and Ned used a similar format with a variety of crossword and quiz-style questions.

Ned, whose Grandma Jean has volunteered for the MND Association for more than 18 years, said: “I wanted to give people something to do in self-isolation and make the period less tiresome. It is designed to bring people together. My Grandma has definitely inspired me and my family to take this cause to our hearts.”

So many of you took to your back gardens, homes and streets to clock up lockdown miles, including Becky Long, who took on two epic challenges in place of the postponed Manchester and Brighton marathons.

Her first challenge saw her run around her garden almost 3,000 times to complete a marathon and her second saw her again take to her garden to run a mile every hour for 12 hours for four days over the Easter Esme Higgs weekend.

Becky, who fundraises in memory of her husband Ray who had MND, said: “The worst bit was how sore my feet were, after constantly running on a continuous bend.”

London Marathon runner, Pete Collins took on a half marathon on his street to keep up with his training.

Pete, whose dad and auntie had MND, ran up and down his street 110 times with his neighbours on hand to support him from their doorsteps.

Charlotte Wilbourn

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Sam Morris

Ned Nicholson-Smith

Pete Collins

kdown fundraisers work ose the gap

Becky Long

Becky Long

Catherine and Emily Davies

Aimee Moreton

Sam Morris completed our longest lockdown run to date when she ran three marathons in 24 hours in just her back garden and living room.

The mum-of-one, whose father had MND, said: “It was a unique experience. I didn’t sleep and only allowed myself 20 minutes of rest at a time. I was determined to keep going. We are in this time which will be a part of history and I will remember doing this. I can’t believe I got a personal best in my living room and garden!”

NHS employee Charlotte Wilbourn walked a marathon in a month in Chesterfield Royal Hospital where she works as a Patient Records Assistant.

Charlotte, whose Uncle Andrew had MND, said: “I wanted to help the NHS during the pandemic and also help those suffering with motor neurone disease. I cannot imagine how scary it is for those living with MND during this uncertain time.”

Determined Esme Higgs shaved her head while in isolation, in memory of her grandad who had MND. The 28-year-old said: “Every little girl has a hero. My hero was my grandad. It was heart- breaking to watch someone who is your hero struggle to do simple things like swallow and stand. I would give anything to be able to provide any sort of comfort for a family who is in the position I was. Just because you’ve never met someone, why should that stop you wanting to support someone who really needs you? My grandad would have loved the fact I was shaving my head for the MND Association.

He knew I was a free spirit from a young age and always encouraged me to be myself and do what makes me happy.”

Emily Davies was inspired to ‘brave the shave’ after seeing her sister Catherine do the same.

Emily said: “My sister’s adventure in aid of the MND Association inspired me to do the same.

“The MND Association is also one of the many charities struggling at this time and is close to home for me due to my family’s history.”

Meanwhile Aimee Moreton climbed the equivalent of Mount Snowdon up her stairs as training for her Mount Kilimanjaro climb.

The 24-year-old, whose grandma had MND, said: “I was originally meant to be trekking Mount Snowdon. Due to coronavirus this could no longer go ahead, so ‘Mount Stairdon’ it was! It was also a good way for me to get in some training, ready for when I trek Kilimanjaro.”

Turn the page to find out how the Association’s staff have been raising money during lockdown. www.mndassociation.org

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Association staff rise Chris Wade Chris James Linda Allen

Steph Steward

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Jenn Dodd

NSPIRED by the efforts of our amazing fundraisers, the Association’s staff have also taken part in events during lockdown.

A virtual Mount Everest climb, a month of fancy dress, a yoga-thon, a virtual quiz and a head shave were among the events which have helped to raise money for the Association at this difficult time.

During the Easter weekend, staff scaled the heights of four famous mountains by climbing the stairs in their own homes more than 5,000 times.

Regional Fundraiser for Yorkshire and Humberside Jenn Dodd, Senior Engagement Fundraiser Julia Beales and Legacy Marketing Manager Emma Fellows teamed up to climb the Three Peaks over four days while Senior Community Fundraiser Steph Steward was climbing Mount Everest.

Steph said: “With so many fundraising events being cancelled the Association stands to lose up to a third of its annual income and that is why we all knew we needed to do something. I couldn’t have done this without the support of the other climbers and the MND community on social media.

Keeping in touch with them all virtually kept me going until I got to the top. It was such an amazing weekend of inspiring fundraising from everyone involved.”

Julia added: “I have climbed Snowdon, but this was definitely much tougher – I think because I didn’t have the beautiful

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Teresa Deacon

scenery to look at. But it was much cheaper than the real thing with no travel costs, and I could watch Netflix while I climbed!”

Meanwhile, brave Supporter Care Officer Paula Solomon shaved her hair off live on Facebook to raise funds.

Paula, whose late husband Dave had MND, said: “Other members of the fundraising team were doing challenges which involved thousands of flights of stairs, so I thought that for a change I would do something a little easier.”

Regional Fundraiser for London and Thames Valley, Russell Spivey hopped a half marathon around his back garden.

Complete with bunny ears and a fluffy tail, he hopped on one leg, or did bunny hops, for almost 12 hours and completed the circuit of his garden 25,436 times.

Russell, who lost his best friend Dom to MND in 2015, said: “It was incredibly hard, but I know people with MND go through so much worse.”

Community Fundraiser Frances Morgan spent a sunny Saturday morning completing a three-hour non-stop yoga session.

Trusts Fundraising Officer Lucy Parkinson, Receptionist Teresa Deacon and Supporter Care Team Leader Steph Carpenter challenged each other to run 5k every day in May. Lucy said: “I think the difference is psychological – you only have your own thoughts for motivation which is not quite the same as a big crowd!”

se to the challenge Brian Dickie

Mark Chapman

ally Light

Nick Goldup

Daniel Vincent

Paula Solomon

Teresa upped her own challenge by picking a different fancy dress outfit to wear each day.

Senior Policy Advisor Daniel Vincent turned quizmaster for a night to host a fun activity for family and friends on Zoom.

He said: “I have personal experience of the disease, so I know just how important it is that the Association is able to carry on its work while being faced with an incredibly challenging set of circumstances due to the coronavirus outbreak.”

Other colleagues were joined by their family for their challenges, including Community Fundraising Manager Gavin Daniels who teamed up with his seven-year-old son Lohan to walk, run, scoot and ride the distance of a marathon during April.

“I have personal experience of the disease, so I know just how important it is that the Association is able to carry on its work while being faced with an incredibly challenging set of circumstances due to the coronavirus outbreak.”

Gavin said: “Charities need our help now more than ever with so many events cancelled. Lohan overheard this conversation and said he wanted to try a really hard challenge to help people who needed it.”

Engagement Officer Stuart Town allowed his six-year-old son Noah to choose an outfit for him each day for a week,

Julia Beales

while Thumb Print editor Clare Brennan ran 26 laps of her garden for 26 days during May. Our Directors Team also got involved in the 2.6 Challenge to raise funds.

They each came up with their own unique fundraising idea linked to the numbers two and six, with Chief Executive Sally Light completing 26 minutes of yoga each day for 26 days, Director of External Affairs Chris James recreating scenes from 26 films in 26 days, Director of Research Development Brian Dickie and Director of Care Improvement Nick Goldup running 2.6km and 5k respectively for 26 days, Director of Finance Mark Chapman picking a different exercise each day for 26 days and Director of Engagement Chris Wade collecting signed football shirts numbered 1-26 to auction.

Director of Fundraising, Linda Allen took part in a 26-minute workout in her garden every day for 26 days.

Sally said: “As a Directors’ Team we were inspired by so many people across the MND community who have risen to the challenge and are undertaking some amazing fundraising efforts during these difficult times. We all chose an activity that was achievable while also giving us the opportunity to step out of our comfort zone, with a shared goal. In these strange times it’s great to have a chance to try something different while knowing the money we raise as a team will support our work for people affected by MND.” www.mndassociation.org

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Joining hands with people livin

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RIENDS and supporters of the Association’s work came together to extend a hand of friendship to people living with MND as part of Global MND Awareness Day on 21 June.

With the world in the grip of a global pandemic, the Association chose to reach out to the thousands of people across the world who are living with, and affected by, MND by offering a hand of friendship, kindness, support, knowledge, love and thanks.

While circumstances mean we can’t be there to show our support in person, the Association encouraged its supporters to spread their own personal messages on social media using the #HandOf hashtag, helping to raise valuable awareness of MND at the same time.

Among the thousands of people who sent messages of support on the day were broadcasters Zoe Ball, Piers Morgan, Michael Ball OBE and

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cricketer Stuart Broad as well as many of our members, supporters, staff and volunteers.

The #Handof campaign was just one of the many ways the Association marked Global MND Awareness Day. In the week leading up to the day itself, a film called The Dance, which depicts the progress of MND through ballet, was premiered by GQ magazine.

The film was gifted to the Association by director and film maker Jess Journo as a tribute to Wendy Gladwyn who dedicated her life to the arts. The film was supported by the Association’s patron Eddie Redmayne OBE. He explained: “This film, through the form of dance, gives you a sense of the brutality of motor neurone disease. It’s compelling with a clear message, ‘Don’t ignore the problem because there isn’t yet a solution.’ I want as many people as possible to watch and share it, even though it’s a little uncomfortable, so that understanding of MND will be greater in the future. It has been gifted to the Motor Neurone Disease Association, a charity which is close to my heart, and it portrays with huge emotion, the gradual loss of control and the tragic nature of stolen dreams.”

The Association held its own ‘red carpet’ release, launching the film on YouTube on Saturday, 20 June. It was shared widely on social media, with film star and North London Branch patron Lily James creating an Instagram story for her 2.4 million followers.

Rugby players Doddie Weir OBE, Rob Burrow and footballer Stephen Darby, who are all living with MND, were interviewed by BBC Breakfast’s Sally Nugent on the Friday before Global MND Awareness Day. The sportsmen discussed how the lockdown had affected both them and their families, and the support they had gained from their friendship.

Separately, Doddie also appeared on ITV’s Good Morning Britain where he was interviewed by Association and West Surrey Branch patron Charlotte Hawkins.

And on Global MND Awareness Day

Alan, Dawn and Sophia Towart shared their story on Global MND Awareness Day.

itself the Towart family were interviewed live on BBC Breakfast. Alan, who is living with MND, appeared on the sofa ‘virtually’ alongside wife Dawn and 10-year-old daughter Sophia. The family shared their lockdown experience and Sophia described how their garden hot tub, partially paid for with an Association grant, has given them the chance to build special family memories during the pandemic.

The Association’s Director of External Affairs, Chris James, joined the interview to explain more about the Association’s work during lockdown, particularly in

Footballer Stephen Darby Doddie, Weir OBE and Rob Burrow and being interviewed on BBC Breakfast by Sally Nugent

ing with MND across the world Awareness Day sees launch of Cure Finders

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relation to campaigning on behalf of people with MND. The Sunday Express also highlighted Global MND Awareness Day by detailing a research review, co-funded by the MND Association, which revealed how a lack of palliative care provision for people with MND can cause emotional distress and, in extreme cases, lead to people experiencing suicidal thoughts.

The story carried interviews and a call to action in the form of a link to the Association’s website and an appeal for donations.

S part of Global MND Awareness Day, the Association launched a Cure Finders appeal – a fundraising initiative to help us raise money for vital research into MND. As the coronavirus pandemic took hold, countless fundraising events have been cancelled, leaving a significant shortfall in our income.

With that in mind, the Association launched Cure Finders, a new community of regular supporters who will play an important part in the fight back against MND by ensuring our research can continue by donating a monthly gift.

The Association’s Head of Research, Dr Nick Cole said: “With Global Awareness Day on 21 June, we’ve been celebrating all the different ways we can support one another, and right now, I can

honestly say that becoming a Cure Finder is one of the best ways that you can support the future of MND research.

“If you’re able to, please sign up as a Cure Finder today. Let’s make sure that nothing – not even COVID-19 – can take away our very real hope of curing this disease.”

The total amount of each monthly gift goes straight into funding research. In return, you will receive regular updates on the progress of our research, directly from the scientists themselves, via an exclusive online Cure Finders Hub. You can find out more about Cure Finders and sign up to become a Cure Finder by turning to the back page of Thumb Print and completing the tear-off slip. You can also find out more information on our website at www. mndassociation.org/curefinders.

Landmarks are lit up to mark special day

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MEATON’S Tower in Plymouth was just one of the landmarks lit up to mark Global MND Awareness Day. In Norwich, the City Hall was also lit up in blue and orange thanks to the efforts of members from the Norfolk, Norwich and Waveney Branch.

How did you mark Global MND

Awareness Day? Send your pictures to clare.brennan@mndassociation.org

City Hall in Norwich

www.mndassociation.org

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‘I know Grandpa wou e, Hi there everyon Buddies.

D N M e th f o e n o ant and I’m I’m Eric the Eleph vy at the r tu y s p to d n a e g ttle bit stran ng time since Things are all a li lo a n e e b e v a h l il ey? I know it w ince you s r e g n lo moment aren’t th n e v e s p chool and perha s t a e r e w u o y f ult time, but o ic f if d many y ll a e r a n e friends. It’s be d n a y il other and m h a c f a e r u r o y te f a k saw o lo we can all do is g in th t n ta r o p im nd my buddies! a the most e m e k li t s ju , e y nice and saf make sure we sta the MND Buddies , r e th e g to e m ti pending lots of s n e e b ll a e ’v e tivity hub at w c a r u While o n o s d n ie r g lots of new f a look at all n e ti k e ta e m ld u n o e c e b u o e y v a e and I h e time to spar m o s e v a h u o y If s to draw and . e g r r tu .o s ic ie p d d d n u a b , d d n a e .m www are stories to r e r e th – o d to s you go online. g e in r o th f e c b ti p s u ta n n a w f o r e th eck with your g h c u o y e r u s e k a onderful w r e h t u colour in. Just m o b a y r to ad Catherine’s s e r u o y e r u s e k ssociation in his a A D N M e th r o f Before I go, m y d to raise mone e lp e h s a h e h s w o Grandpa and h Catherine! e n o d ll e w , r ta s r a real supe memory – she is next time! u o y e e s ll I’ d n a ne Stay safe everyo

Eric

Ali the Alligator

Carly the cat

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Rini the Rabbit

Max the Monkey

Meet my other buddies

ould be proud of me’ Hello!

him ‘Number 1 Silly Grandpa!’ He used to come and visit us but we didn’t know that the last time he came here, in May 2019, would be the last time ever. We took him to see our allotment when he visited last year. A few months later we found out that he had motor neurone disease.

“We went to visit Grandpa at his house in Shrewsbury just before the New Year.

His voice was a bit fainter and he sat down lots. Just a few weeks later Daddy went to visit him and he was much worse and needed a special machine to help him breathe. He died quite soon after we found out what was wrong even though we thought it was going to be about two years.

“Before Grandpa died, I started making and selling loom band bracelets, pompom pets and cupcakes, but sadly coronavirus prevented me from selling any more. So I decided to try and raise some more money by completing 26.2 laps of our allotment plot on the day that the London Marathon was due to take place.

“When it came to the day of my run, I was really excited because I had already raised nearly £600! Doing 26.2 laps was quite hard towards the end but thinking about Grandpa and how proud he would be kept me going. I eventually got to the end and went through the finish line and I felt really happy.”

“Hello, my name is Catherine and I am eight years old.

“I decided to raise some money for the MND Association because my Grandpa died of MND in March. I was really sad and I wanted other people whose relatives have MND to survive so that they don’t feel as sad as I did.

“Grandpa was funny. Me and my cousins, Eloise and Aidan, used to call

More about me!

Name: Catherine Age: Eight Favourite subject at school: Maths Favourite food: Apples Favourite movie: Beauty and the Beast

Favourite book: All of them, I love reading!

Favourite pop stars: Pixie Lott What would you like to be when you grow up? A writer, a ballet teacher and a puppy trainer

Would you like to be our next MND Buddy?

If you would like to write for the next edition of Thumb Print please get in touch with editor, Clare Brennan at clare.brennan@mndassociation.org or on 01604 611877. You can also get in touch via Twitter: @mndaeditor. www.mndassociation.org

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Members have their say on plans for the future

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N the winter edition of Thumb Print we asked you to help us shape the Association’s future by letting us know what you think our priorities should be in the years to come.

Readers were asked to think about how the Association should prioritise its funding and activities as we start work on developing our new strategy – an important document led by the Board of Trustees, which sets out the work we need to do to help us move closer to our vision of a world free from MND. “As we start to develop our new strategy, it is vital that we fully understand your ever-changing needs and the challenges you all face. By doing so, we will be able to make sure that the money, so generously raised and donated by our fundraisers and supporters, really counts – spending it on projects that will improve care, ground-breaking research and innovative campaigns which will help us to raise awareness of MND.”

In total, 241 people completed the survey, which was available on a postcard and online, taking the time to tell us how they would distribute £10 across our three core areas – care, research and campaigning.

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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While there were many different ways to divide the £10, the average response was to spend £4.70 on funding and promoting research, £3.50 on improving care and support, and £1.90 on campaigning and raising awareness.

We also asked members to give us feedback on the work we do now and what we could do differently. Almost 80% of people provided one or more positive comments about what we do well, with the most frequent comments being about the level of support available to people affected by MND, both locally and nationally. There were also many positive comments about our information guides, as well as the key role the Association plays in MND research.

Suggestions about what could be improved included more proactive and frequent contact with people living with MND and their families, and more work on raising awareness of MND and its devastating impact.

The Association’s Chief Executive Sally Light, pictured, said: “Thank you to everyone who took the time to complete the survey and share your opinions with us.

“As we start to develop our new strategy, it is vital that we fully understand your ever-changing needs and the challenges you all face. By doing so, we will be able to make sure that the money, so generously raised and donated by our fundraisers and supporters, really counts – spending it on projects that will improve care, ground-breaking research and innovative campaigns which will help us to raise awareness of MND.” All the feedback collected during the survey will be discussed by the Association’s Board of Trustees at their meeting in July.

Finding new ways to adapt to a ‘new normal’

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HE coronavirus pandemic has had a devastating impact on the lives of families affected by MND right across England, Wales and Northern Ireland and my thoughts, and those of my fellow trustees, are with you all at this very difficult time.

As the crisis has unfolded, the Association has worked hard to adapt and respond, developing its services to offer all the support it can. I would like to take this opportunity to pass on my sincere thanks to our volunteers, supporters and staff, who I know have been working tirelessly in recent weeks to ensure people living with MND and their loved ones continue to have access to the guidance and support they need.

Like countless other organisations across the UK, the Association has had to develop new ways of working, with the vast majority of its day-to-day business now being conducted online.

Our network of branches and groups have also embraced this change, hosting support meetings and coffee mornings online, via video conferencing platforms such as Zoom and Teams.

Similarly, the Association is looking to move many of its major events online, with both the AGM and International Symposium on ALS/MND now taking place virtually later this year.

The AGM, which would usually be held in July, will now take place on Tuesday, 13 October. As always, the Association’s members will be encouraged to take

part and information confirming the agenda and how you can attend will be made available in due course.

Planning is also underway to host the International Symposium on ALS/ MND, which regularly attracts 1,000 researchers and clinicians from around

the world, online.

We will, of course, update our members with any developments. In the meantime, please continue to follow the guidance and stay safe.

Richard Coleman, Chair of The Board of Trustees

International Symposium to be held online

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OSTERING strong relationships between researchers around the world and sharing new information about the disease as quickly as possible is a vital part of the fight against MND. Each year, the Association organises the International Symposium on ALS/MND which attracts more than 1,000 delegates, representing the energy and dynamism of the global MND research community.

As a result of the continuing global uncertainty caused by the COVID-19 pandemic, the Association has taken

the very difficult decision to cancel this year’s Symposium which had been due to take place in Montreal, Canada in December. This decision follows detailed consultation with the International Alliance of ALS/MND Associations and our 2020 hosts ALS Canada and ALS Quebec.

The Association has considered many factors over recent weeks, including the potential for global travel, rules around gatherings and social distancing, and the financial implications of the various

scenarios open to us. By cancelling the event, we have limited the financial risk to the MND Association at a time when, like many charities, we are facing a considerable fall in income.

The Association will, however, be developing plans for a Virtual Symposium which will still feature plenary talks, poster presentations and networking throughout the event.

For more information, please visit our Symposium website: www.symposium. mndassociation.org. www.mndassociation.org

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‘Feeling embraced by nature – that is the ideal’

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wonderful trips and even adventures. She loved HERE can be few people on earth who nature and being outdoors and her scooter gave her understand the power of nature and the great the freedom to get out as much as possible – she outdoors quite like the legendary mountaineer often left me standing! Caring for Wendy was a very Sir Chris Bonington. intense experience, but we shared it all together and For Sir Chris, it was a love affair that started at a experienced real joy.” young age. Aged just 16, Sir Chris started climbing, Perhaps one of the hardest parts of Wendy’s journey leading to him taking on many of the world’s most with MND was when she started to experience daring ascents, perhaps most famously in 1975 when difficulties with her speech. he conquered Everest.

Sir Chris said: “She never liked computers, so she While the expeditions may now be less frequent, used notebooks instead. I still have them all.

Sir Chris’s passion for the great outdoors remains as “We had a fantastic team around us, carers - and strong as ever – and in fact has increased during the my son Rupert was wonderful. It was a very powerful dark days of lockdown. part of our lives. Wendy was always so courageous, “We are very lucky in that our home in Cumbria is so positive. Right to the end she was always thinking on the edge of the fells,” he explained. “We only have of others, ringing her little bell to get to go over a stile and we are in mile “As we go through this attention and writing to offer Jean, her upon mile of open countryside. We crisis, I would encourage physio, a cup of tea. have been taking the time to walk anyone who is living with “The morning before she died she every day.

“My heart goes out to people who MND to try and enjoy the indicated she wanted to go round are living with MND at the moment, I great outdoors, wherever the garden. We hoisted her into her motorised wheelchair and Rupert can’t imagine how difficult it must be.” possible.To get outside operated the finger control and she In 2013, Lady Wendy, Sir Chris’s wife and feel embraced by of more than 50 years, was diagnosed nature, that is the ideal. If slowly travelled around the lawn bordered by the many flowers and with MND. In the year that followed I have learnt anything it is shrubs she had planted over the years. they faced one of their greatest how important our friends I think she was saying goodbye. I take challenges – together. and family are to us.” great comfort in knowing that her He said: “I loved my career as a last moments were not agonising and that she died, mountaineer. But climbing is undoubtedly very peacefully, at home in the arms of myself and Rupert.” self-indulgent and selfish. There would have been In recent weeks, as the entire country has faced devastation if I had been killed. But Wendy was always coronavirus - one of the biggest challenges in living behind me, 100% supportive and when she was memory - Sir Chris has once again found himself diagnosed with MND, I faced it in exactly the same turning to nature, alongside his second wife Loreto, way. I did everything I could to support her. whom he married in 2016.

“A good friend of mine, who was a neurologist, Sir Chris said: “I never believed I would find love referred us to a consultant in Newcastle. Wendy had some scans and it was just before Christmas 2013 when again, but Loreto was married to one of my oldest the consultant told us the news. We had suspected that friends, who died from Alzheimer’s a few years before.

“As we go through this crisis, I would encourage it might be Multiple Sclerosis (MS) but never MND. It anyone who is living with MND to try and enjoy the was too terrifying to contemplate and we knew it was great outdoors, wherever possible. To get outside and comparatively rare. We were in total shock.” feel embraced by nature, that is the ideal. If I have As Wendy and Chris came to terms with MND, the learnt anything it is how important our friends and great outdoors became their constant friend. family are to us. I hope we emerge with a greater He said: “We were lucky that we could adapt quite appreciation for the world and with greater tolerance easily, we bought a disability modified van and a for each other.” scooter for Wendy. Despite everything we had some

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Firms commit to raise money for people affected by MND

Staff from CHG-MERIDIAN have been raising money for the Association for almost a year. Picture taken before social-distancing

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INE and spirit merchant Berry Bros. & Rudd have selected the MND Association to be their charity partner for the next three years.

The charity was selected by members of staff after the company’s Wine Buyer, Davy Zyw, was diagnosed with MND. While some fundraising activities have been put on hold as a result of coronavirus, eight members of staff took part in a sponsored head shave during lockdown, raising almost £5,000.

Staff at technology firm CHG-MERIDIAN have also been busy raising money for the Association during lockdown.

The team decided to take part in the 2.6 Challenge, giving colleagues the chance to bake, walk, take part in fancy dress fun runs, indoor golf and a gym challenge. It also helped to encourage a spirit of giving and having fun in these tough times.

For more about the 2.6 Challenge turn to pages 14 and 15.

Will Wrightson was just one of the staff members from Berry Bros. & Rudd who took part in a sponsored head shave

Broadcaster’s thanks as radio appeal hits £28,317

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Matthew Bannister pictured at the BBC in February

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ROADCASTER Matthew Bannister has thanked everyone who donated to the Association’s BBC Radio 4 Appeal helping to raise more than £28,000.

Matthew, a regular presenter on BBC Radio 4 and a former controller of BBC Radio 1, used the appeal slot in March to talk about his dad, Neville, a keen scientist, who died from MND. He also shared information about MIROCALS, a pioneering clinical trial by Professor Nigel Leigh, funded by the MND Association.

Listeners were asked to help fund Professor Leigh’s work - £75 could pay for half a day of research. In total, £28,317 was raised.

Matthew said: “I would like to say a huge thank you to everyone who donated to the MND Association’s Radio 4 Appeal which was featured on the station in March.

“The timing was tricky, as the Appeal was broadcast the day before the country went into lockdown. This makes the total raised even more heartening – in the middle of an unprecedented crisis people were touched enough to take the time and effort to donate to the charity. The money will help to fund the continuation of Professor Leigh’s MIROCALS trial, which is looking at whether a cancer drug, Interleukin 2, can be repurposed to slow the progression of MND. I will be following with interest.”

Care information updates

Find our information about coronavirus at: www.mndassociation.org/coronavirus

We’re delighted to announce that these delayed launches are now available:

When someone close has MND – workbook for children aged four to 10: This successful workbook has been updated. Familiar characters from our storybook Why are things changing? now appear in the revised workbook and tackle some of the more sensitive aspects about the disease. The workbook activities can help open conversations about MND in an ageappropriate way and adults can share pages at a pace that’s right for each child.

Telling people about MND: Our new compact guide on how to tell others about your diagnosis and ongoing needs with MND. It looks at the emotional impact of this and also how someone can act as an advocate on your behalf.

We have also revised the following information sheets: 2D – Progressive Muscular Atrophy 5A – Riluzole 7D – Voice banking and message banking 10A – Benefits and entitlements

Emotional and psychological support – for people with and affected by motor neurone disease (MND): Our new compact guide to help with the emotional impact of an MND diagnosis. It includes guidance on the type of counselling therapies that may be available. This replaces information sheet 9C. Changes to thinking and behaviour – for people with motor neurone disease (MND): Our new compact guide about changes to thinking and behaviour that some people with MND can experience. It includes guidance for the person with MND and their carers. This replaces information sheets 9A and 9B. 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 with our information?

We’re looking for people with MND or Kennedy’s disease, and their carers, to help with our information. We have opportunities to get involved with content on a range of resources and different formats, including animations.

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 how to join our User Review Group, contact: volunteering@ mndassociation.org

Join in the Conversation Our online Forum is an ideal resource for anyone living with or affected by MND. It is run by the MND Association, but most content is created by people affected by MND, who share first-hand experiences as well as medical, emotional and practical support.

It is also a safe place where people who are experiencing symptoms or awaiting diagnosis can ask questions and express their concerns.

Anyone can access the forum to read content, but you must register if you’d like to ask a question or comment.

http://forum.mndassociation.org/forum.php

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‘There’s still so much I can do. I’ll just keep going!’

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Former footballer Len Johnrose was diagnosed with MND in 2017. During lockdown, Len spoke to Thumb Print editor Clare Brennan about how he’s been using the time to work on some projects to his heart.

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OR former professional footballer, Len Johnrose, lockdown has been a busy time.

As well as having the chance to spend more time with his wife Nadine and their children, Elizabeth and Patrick, Len, who is living with MND, has had the time to work on some projects which are close to his heart.

“I’ve loved being in lockdown,” he said during our video call in May. “I’ve been really busy. I’m determined to keep going, I’ve still got a lot more to do!”

Right at the top of the list has been voice-banking, something which has been important to Len since he was diagnosed with MND in March 2017.

He said: “From day one I’ve known I wanted to bank my voice. It’s just something that’s really important to me, in fact, I think it’s something everyone should consider as you never know what’s around the corner.

“The aim of Project 92 is to raise awareness of MND among current footballers and staff, and raise money. I intend to visit all 92 grounds in the football league, either in person or via video link and encourage every footballer to donate as much or as little as they can.”

“I think I’m too competitive for my own good, but I got it all done in record time – 45 minutes and it was out of the way!”

Len has also been involved in Project Euphonia – an initiative set-up by the MND Association and tech giant Google which is training voice-activated technology to recognise and translate dysarthric, or slurred, speech it is spoken. The words are then displayed on a screen – for example, a smartphone or tablet. It is hoped Project Euphonia will enable people whose speech has been affected by MND to communicate using their own voice for longer.

He said: “That process took quite a while, but it still only took four hours, which I did over the course of a week. Your voice is part of your identity and advances are being made all the time, which is fantastic.”

It was August 2018 when Len, who played for clubs including Burnley, Bury, Hartlepool United and Blackburn Rovers, bravely told the world he

had been diagnosed with MND during a moving interview on BBC Radio Lancashire. Since then, Len has been keen to share his story and recently he has joined forces with two journalism students from the University of Central Lancashire – Charlie Le Noury and Ashley Edwards - to create The Lenny Johnrose Podcast.

He explained: “I went to the university to give a talk and I was asked if I would do a Desert Island Discs style compilation for Dying Matters Week. Nadine suggested that we could perhaps do a documentary to help raise awareness of MND, as there are still so many people who don’t know about it. The idea of the podcast came up and I thought it would be great way of letting people know where I am.”

Each episode of the podcast features a special guest and in recent weeks, Len has been joined by another former footballer Stephen Darby, who is also living with MND, as well as many family and friends.

He said: “I’ve recorded it over Teams and it’s been great – it’s certainly kept me occupied!”

As if all that wasn’t enough, Len has also been busy arranging a fundraising ball, which is now due to be held in February, writing his autobiography called Finding a Way and helping to raise awareness and funds for the MND Association through Project 92.

He said: “The aim of Project 92 is to raise awareness of MND among current footballers and staff, and raise money. I intend to visit all 92 grounds in the football league, either in person or via video link and encourage every footballer to donate as much or as little as they can. A lot of that work has been put on hold due to coronavirus. I’ve also been working a video for social media and Sky Sports presenter Jeff Stelling has agreed to promote it too.

“My book, which should be available in September, tells the story of my life and talks about how I have coped with being diagnosed with MND. It was an emotional thing to write, but it’s finished now and I’m looking forward to seeing it.

“MND is affecting me more now, but there’s so much I can still do. I’ll just keep going!”

Tickets for the masquerade ball are available from The Winter Gardens website at www. wintergardensblackpool.co.uk For more information about how you could get involved in Project Euphonia visit g.co/euphonia

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David’s literary legacy lives on

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HE family of an author who died from MND have set-up a new publishing company to ensure his stories can be enjoyed for generations to come.

David, pictured on his 30th birthday with his brother Peter, shortly before being diagnosed with MND

David Greaves, a former ultramarathon runner and triathlete, was diagnosed with MND shortly after his 30th birthday and died in 2016. In the last year of David’s life he wrote ten children’s stories, most of them using eye-gaze technology.

So far, three of David’s books have been published – Philippa and the Homeless Bumblebee was first published by Friends of the Earth in 2015, followed

by Mr Snuffles’ Birthday in 2018. David’s third book, The Homesick Fox was published in April this year. The first two books have now been reprinted

by Stanage Press Ltd, a publishing company set up by his parents Andrew and Sarah, David’s wife Philippa, and his elder brother Peter to ensure David’s literary legacy lives on.

David’s father, Andrew said: “David was extraordinary. He had great stamina and strength of character and loved the outdoors.

He lived and worked in London, helping with

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David and his wife Phillipa

Transport for London’s creation of a super-highway for cyclists. He loved his job, but he found city life uncongenial – there was always a part of him that pined for the Peak District, his spiritual home.”

Andrew explained that David had started writing stories on his mobile phone, something which continued until he was diagnosed with MND in June 2015. As his MND progressed, David used eyegaze technology to enable him to keep writing.

Andrew said: “MND took so much away from David but it did give him the opportunity to step back from his job, allowing him to fulfil his vocation. His stories are life-affirming and speak to children and adults alike.

David pictured a year later on his 31st birthday, surrounded by his family

“The books are works of art.

They are beautifully illustrated

by Emily Wallis, and Danielle Callaghan who worked closely with David, so she could interpret his words perfectly. All David’s stories are also written in verse, which is quite remarkable when you consider how poorly he was.

They are full of playfulness and fun.”

David, his wife Philippa and their family and friends have now raised almost £100,000 for David’s 2Fingers2MND Tribute Fund for the MND Association.

David’s books are available from the Stanage Press website, www.stanagepress.com, from independent book shops, or from Waterstones and Amazon.

Women come together to help fight MND F IVE women – each with their own personal experience of MND – have come together to help support those who are caring for loved ones living with MND. Chiara Quadranti and her sister Stephanie, Elle Brown, Alex Gibson and Emma Frampton have formed The Collective, an online group dedicated to supporting carers, sharing information and raising awareness of MND.

“It’s a community where carers can find practical advice, emotional support and simply a space to share their story and be heard.”

Chiara and Stephanie’s father, Roberto, was diagnosed with MND in 2018 and died just over a year later. The experience had a profound effect on the whole family, not least their mother, who became Roberto’s carer.

Chiara explained: “One of the things that struck me was the immense pressure put on Mum overnight to be his sole carer. The pressure comes from the fact that MND is not an illness that can be treated medically. Instead, it’s an illness that requires care. Caring

is figuring out how to put nappies on. Caring is dealing with paperwork.

Caring is Googling how to prevent choking. Caring is trying to decipher government grant systems. Caring is caring for yourself while you care for another 24/7. Caring is endless and unforgiving.

“When Dad was diagnosed, I remember the numb shock as I Googled it on my computer at work.

Cycling home that day, I resolved to do something to help him, hopeless though the situation seemed. My sister Stéphanie and I embarked on a crazy mission: an Ironman and 220km, sixstage ultramarathon to raise awareness and funds for MND. Over the next nine months, we cumulatively ran 2,800km, cycled 5,000km and swam 230km and raised £12,000. He passed away from a stroke on 26 December, 2019, ten days after moving into a care home.”

After joining forces with Elle, Alex and Emma, Chiara and Stephanie formed The Collective and created an online community on Facebook to give others affected by MND the chance to share their own experiences.

Chiara said: “Our primary aim is to provide a network for carers, both those who are currently caring and those who have done so in the past.

It’s a community where carers can find practical advice, emotional support and simply a space to share their story and be heard.

“All MND carers are very welcome to join and our aim is to reach and help as many carers as possible. Beyond the community, our mission as a collective is to help raise awareness of MND and give this horrific illness the attention it deserves.”

For more information about The Collective visit www.facebook.com/groups/ mndcollective. www.mndassociation.org

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branchesandgroups

Looking back over an incredible year Greg Broadhurst, Chair of the Manchester Branch of the MND Association, looks back over a successful year of fundraising alongside the former Mayor of Stockport, Councillor Walter Brett.

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N May 2018, the new Mayor of Stockport Councillor Walter Brett took office and the MND Association was chosen as one of two charities to benefit from his fundraising.

Walter has a personal connection to MND as he has a family member living with the disease. We would like to say a huge thank you to him for all his help.

The year of fundraising started with the mayor-making ceremony. Both myself and our Branch Secretary, Ann Powell, were invited to a fantastic reception to celebrate the start of Walter’s year in office. During the event, we had the opportunity to mix and talk about our work, as well as officially starting our fundraising.

On Global MND Awareness Day in June, Stockport Town Hall was lit up in the orange and blue of the MND Association. Walter joined us on the steps as night fell, and we could see the building glow. It was also a great opportunity for members of our branch

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Above and below, Greg Broadhurst pictured with mayor, Walter Brett and Association supporters

to meet him, and for him to meet the great people involved in our area.

In December, we had our branch Christmas Buffet, and the deputy mayor of Stockport, Wendy Meikle, attended on Walter’s behalf. We then moved into Spring and took part in many amazing events.

In March 2019, we held a St Patrick’s Day-themed event organised by Linda Lam, which was kindly hosted at her Rainbow 88 restaurant in Cheadle Hulme. We had a great night, and thanks to all involved, especially Linda, her team, and Councillor Wendy Meikle who helped us raise an amazing amount.

The Mayor then organised an abseil down Stopford House and he asked us to take part. The committee voted for me to take part and as a proud Stopfordian, I was the perfect person to join in.

In April, a concert was held at Stockport Town Hall, featuring the Fron Male Voice Choir. Volunteers from the branch, along with those from Parkinson’s UK – Walter’s other charity of the year - all helped to make the night a great success!

At our branch AGM in April, Walter attended and gave a powerful speech

to thank everyone for their hsupport and helped us present our volunteers with their long service awards. I had the honour of presenting Walter with a certificate of thanks for having us as one of his charities.

But it didn’t stop there!

In Stockport, a Foodie Friday is held every month. Walter arranged for us to have a stall and a bucket collection and joined us on the night to help out. He was brilliant during the bucket collection and had the good folks of Stockport digging deep. Huge thanks again to volunteers from our branch and Parkinson’s UK for their help.

To end the year in style, the Mayor’s Ball was held. The night was a huge success and there was a fantastic party atmosphere. Walter worked hard to make sure the donations on the night were maximised. We had a great chance to meet those who had helped during the year and to say thank you to everyone for their help. The evening was attended by mayors from across Greater Manchester helping us to raise awareness.

In total £17,500 was raised to be split between the two charities – what a fantastic year!

branchesandgroups

Pictured from left to right are Ann Adcock, Mary Dawson, Bob Adcock and Billy Dawson at the MND Association’s East Surrey Branch race night in February

Supporters join in the fun of race night

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EMBERS of the East Surrey Branch of the Association got back in the saddle for the group’s annual race night in February.

As well as enjoying a fish and chip supper, punters placed bets on eight video horse races which were shown throughout the evening. A raffle helped to raise almost £700, which will help

the branch continue its vital care and support to local people living with MND. Branch Chair, Simon Edmands, thanked everyone for supporting the event, adding, “It was a great night out, with a fantastic amount raised, and it’s definitely odds on that we’ll be organising it yet again next year!”

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

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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 before sending.

£6,500 raised by supporters: Sally Marien is part of a committee which organises an annual walk raising money for different charities. This year they chose to support the MND Association and were planning to walk the Serpents Trail in West Sussex, a 64-mile route from Haslemere to Petersfield. The founder of the walk, Tony Maxse, died last October after being diagnosed with MND. Unfortunately, due to coronavirus, the committee had to take the difficult decision to postpone the walk until April 2021, however they were still able to donate almost £6,500 which had been raised before the walk.

‘In memory of my Grandad’: Nine-year-old Ava had her long hair chopped and raised £550 in memory of her Grandad. She said: “I had the idea to cut off my hair for charity a while ago to raise money in my Grandad’s memory, but thought I would wait to let it grow, it got really long in the last year so I thought it was time! I have so many awesome memories of my Grandad but the thing I remember the most is cuddling up on the sofa eating rice pudding together - I always called him my hot water bottle.”

Silence really is golden: Coffee shop manager Sam Myrdal once again took part in Silence Speaks in honour of one of his customers, Mark, who is living with MND. He said: “Mark has always been a very witty person, I like serving him because of his dry sense of humour.

Even after his diagnosis he remains positive. He told me when I started this campaign that he wanted to raise awareness; the more people who realise how awful this disease is the more likely that it can be cured one day.” Sam’s colleagues from other branches supported his fundraising efforts by displaying collection tins and holding raffles. Thanks to Caffè Nero’s match funding scheme they hope to raise an incredible £5,503.

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Alice is up for the challenge: Alice was part of a team of medical students from the University of Southampton due to take part in the Southampton Half Marathon in April. When the event was cancelled due to coronavirus, she was determined that her training shouldn’t go to waste so decided to run four half marathon distances throughout the month. In an interesting twist, she decided to use the trend of Strava Art to run routes which spelt out MNDA over the four runs. Alice said: “Until this year I had never run further than 5k, so training has been a challenge, but I’ve really enjoyed it. Since the weather has been so nice it’s been perfect to get out of the house once a day for a run.”

Alice and the team have raised £1,070 for the Southampton and Winchester Branch.

thankyou Christie’s Big Half Challenge: Christie Evans was lucky to take part in one of the few sporting events to take place this year, the Vitality Big Half Marathon on 1 March. She said: “I took up running as my new year resolution. My husband and I joined the local Park Run and, as the weeks went by, we started to enjoy it. When my Grandad passed away in May I wanted to do something for the MND Association as a way of giving thanks for the support they’d given our family. I found the Vitality Big Half Marathon, a running festival for everyone on the website which sounded perfect!” Christie raised an amazing £540.

Quizmaster goes online: Simon Fotheringham, host of Nottingham pub The Trent Navigation’s popular Sunday night quiz has taken to hosting the quiz on Facebook Live during the lockdown. He nominated the MND Association to benefit from their recent quiz which had more than 500 participants.

An inspiration: John Meehan raised a whopping £4,385 when he decided not only to shave his head, but dye his remaining hair too. He shared The Big Shave live on Zoom with his work colleagues who had donated generously to his fundraising, in addition to a substantial donation from his employer Chubb. John said: “I have a friend who has been living with MND for a few years and always felt I needed to do something to raise funds and awareness. The recent events with Rob Burrow of Leeds Rhinos really gave me an injection of motivation having attended the testimonial at Headingley. But what really inspired me was seeing Kevin Sinfield complete a solo marathon and feeling I needed to do something positive in the lockdown.”

Mike’s 10k goes virtual: Mike wanted to mark the 20th anniversary of his father’s death from MND, so decided to sign up for the Dorney Lake 10k in Windsor. Having done lots of training for the event, when it was cancelled due to social distancing rules, he decided to run his own virtual 10k near his home in Walton-On-Thames. Mike completed his first ever 10k in 1 hour and 6 minutes, and admitted he hoped his dad would have been ‘very proud’ of his achievement.

Follow in Lynn’s footsteps: Lynn Baxter, a member of the South London Branch, joined the 2.6 challenge by pledging to walk 26,000 steps over five days. Not only did she smash this target by walking almost 59,748 steps, she also added an unusual twist to generate more social media interest. Lynn explained: “I invented different ‘sports’ to add to the challenge of completing the 26,000 steps under lockdown.

This meant researching what sports have been historically part of the pentathlon and inventing ways the sports could be completed by me alone in my living room.” By adding sports including fencing, hockey and gymnastics Lynn raised an amazing £780.

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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.

Useful tips for making the most of technology

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was very interested to read Stephen Appleyard’s account of using technology to carry on writing in the most recent addition of Thumb Print.

I was diagnosed in January 2016 and, like Stephen, my hands/arms are of minimal use, in my case for about the last three years. Realising this was happening I set about trying to come up with a computer solution which is a variation on Stephen’s idea and which some might find useful.

I use a foot switch identical to Stephen’s for left-clicking the mouse, but for moving the cursor itself I use a foot mouse which is actually a lowprofile Bluetooth hand mouse designed, I believe, for those with wrist injuries or carpal tunnel syndrome. If you can move your feet around reasonably well then you can quickly learn to move the mouse about accurately. A bit of non-slip tape on the top surface of the mouse helps as does a large mouse mat. It’s difficult to manipulate either the switch or the mouse with shoes on, so I find a heated mat underneath everything keeps your feet from freezing in the winter!

I’m sure you are acquainted with the joys of voice recognition software; I use the Nuance company’s Dragon professional program and it probably allows me to compose documents at least as fast as I used to with a hand keyboard. It does also allow you to give keyboard shortcut commands and to right-click the mouse, so you only need

one foot button. While the on-screen keyboard included in Windows is a valuable tool, voice recognition is much faster if you are able to use it.

I was very interested to read about Stephen’s camera mouse though and will certainly store that idea away in case I need it in the future.

Finally, but still on the subject of technological assistance, I wonder how many of your readers are aware of the brilliant new accessible software which Apple made available in a beta version for free which allows virtually complete control of iPhones; it even enables you to control your phone with a foot mouse if you want to! Losing the

ability to independently use a phone was becoming extremely frustrating but this software gives me virtually the same level of control as an able-bodied person.

You can find out more information by searching on Amazon - I would be very happy to discuss the above set-up with anyone who is interested. My email address is huwr@hotmail.co.uk Huw Roberts, via email Do you have any tips that other readers of Thumb Print might find useful?

Write to the editor, Clare Brennan at clare.brennan@mndassociation.org

diarydates • 13 September: Mission 5000 fundraising event, more details available from www.mndassociation.org/5000 • 13 October: MND Association AGM, more details on page 25 38

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aboutus

Making sense of the uncertainty Here, Godfrey Kent, co-ordinator of the Nottinghamshire Branch’s Second Thursday Group shares a poem he was inspired to write in the midst of lockdown.

All change Our lives have changed, been rearranged Out of all recognition Our jobs are on furlough So it’s out with the Merlot But we mustn’t lose sight of the mission Which is keeping apart and it’s clear from the start That most people like being together But step out of line And you will soon find You’re dining at Her Majesties pleasure But the pub’s where we live and what would we give For a pint of good honest ale But they’ve stopped all the brewing, now our lives are in ruin And our patience is beginning to fail On Thursdays we go out and clap, about eight For the NHS heroes, we think they are great But spare a thought, for that other front line The cleaners the bin men, they also shine Into a strange place our lives have been hurled And now we live in an uncertain world Where the orchestra’s playing a different tune And our sanity is saved by something called Zoom!

Speaking out on behalf of people living with MND

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UTHOR Veronica Lamb, who is living with MND, wrote this poem in protest at the Government’s refusal to put people living with MND on the list of extremely clinically vulnerable people during the coronavirus crisis.

She explained: “I was outraged and I did everything the MND Association asked us to do, I sent emails to my MP, Health Secretary Matt Hancock and anyone who would listen. But on a positive note, this poem really raised awareness of MND on social media.”

Outrage One step in front of the other, that’s the only way to go.

Some people get so much support, but others they don’t want to know.

We don’t ask for much, we just get on with things, MND isn’t catching, it’s just the sufferer it stings.

So please think again when you make up your rules, don’t treat us like COVIDIOTS we are no one’s fools.

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 611855 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 611855 or email membership@ mndassociation.org

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

www.mndassociation.org

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