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reaches Downing Street
An open letter to Prime Minister Boris Johnson
‘WE are a group of patients living with motor neurone disease. We are calling for more investment and concerted action to find a cure or life-saving treatment for this horrific disease. ‘MND is a death sentence. Each of us will lose the ability to walk, use our arms and hands, speak, eat and ultimately breathe. Most of us will become completely paralysed and trapped in our own bodies. We will all die of the disease because there are no treatments to help us. One-third of us will die within a year, and twothirds within two years. And MND is not rare – it will kill 1 in 300 people or 200,000 of the current population.
‘However, research has now reached a point where a cure or life-saving treatments can be found. This is thanks largely to the work of charities and donations from the public. The UK Government does invest but at a level of less than £5 million a year (not counting research into neurodegenerative disease more generally, which is of little help to terminally ill MND patients). This is insufficient for a disease of this nature.
‘World leading UK scientists propose co-ordinated action across all UK MND research centres to establish a virtual MND Translational Research Institute to accelerate the delivery of life-saving treatments, at a cost of £50m over five years. A detailed plan has been submitted to the Government, which will also establish the UK as a leader in this area of research and forge the way to discoveries in related diseases such as dementia. The current piecemeal and protracted approach of funding individual projects will not deliver the life-saving treatments we need. We patients fully support our scientists and charities.
‘Covid has shown what can be done where there is a will and sufficient investment. MND patients are fed up with being told that it will be many years until life-saving treatments can be developed – we believe they can be delivered much sooner. How Wheelchaircars.co.uk many more people will die a horrific death before we push for change? How many more families will be traumatised at watching their loved ones go through such an ordeal? Many of us may not survive long enough to benefit but we want to prevent the suffering of future patients: 200,000 of the current population.
We urgently appeal for action and investment now.’
Chris, 54, father of a son and daughter aged 11 and 16, senior police officer, Bromsgrove. Lee, 58, married father of one son, forced to stop adored career early along with his wife, Sussex. Emma, 40, mother of a four-year-old daughter, deputy headmistress, Northants. David, 64, father and grandfather, publisher/events manager, Surrey. Nicola, 47, mother of two sons aged nine and six, Essex.
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You can read the letter online at patientsunited2endmnd.org
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Association visitor Justin helps with new designs
WHATEVER your background, whatever your skills, you can help the Association make a huge difference in the fight against MND.
Following the launch of the Association’s membership strategy earlier this year, we’ve been encouraging our members to think about the ways they could use their own unique skills and experience to help us enhance and develop the work we do.
AFAMILY from Gwynedd in Wales have come together to raise money for the local branch of the MND Association in memory of their beloved husband and stepfather who died in March.
Terry Williams was diagnosed with MND in February 2020 and died in March this year.
In December, Terry, Claire and her children Dylan and Catrin raised £1,000 by organising a raffle. In July, Claire and Catrin took part in a sponsored walk from Pennygroes to Caernarfon and
Justin Anderson pictured with his business partner David Norton Among those taking up the challenge is Justin Anderson. As well as being the Association visitor coordinator for East Sussex, Justin volunteered to support the Association by developing a new logo for MND Association Membership with the help of his business partner and Creative Director, David Norton. Justin explained: “During the pandemic we found that some of our project work dried up and for the first time in 30 years we found ourselves with time on our hands.
“I contacted the Association to offer our services and it coincided with the Association’s development of its membership strategy.”
Justin and his team came up with a ‘mood board’ of ideas and then worked alongside the Association’s teams to develop the new concepts resulting in the new look of our membership materials.
He said: “It was very interesting to be involved and to look at the work of the Association in a different way. Many of our members have individual skills which could be very beneficial to the whole MND community.”
If you would like to learn more about the opportunities available email volunteering@mndassociation.org or contact your Area Support Co-ordinator.
Fundraising in memory of Terry
“The MND Association is a cause very close to all our hearts. They were a lifeline to us and do so much to support people living with MND.”
Claire, pictured with her daughter Catrin taking part in the sponsored walk raised more than £2,000.
Claire said: “The MND Association is a cause very close to all our hearts. They were a lifeline to us and do so much to support people living with MND. We wanted to do this walk in memory of Terry whom we love and miss very much.”
Claire’s husband Terry who died from MND in March
Association’s Board welcomes new trustees
CHAMPIONING the needs of people living with and affected by MND will be among the priorities for two new trustees who were officially welcomed to the Association in July.
Debbie Martin and Liz Ellis were elected by members of the MND Association during the summer and took their places on the Board of Trustees at the Association’s online AGM in July.
Liz’s son was diagnosed with the disease in November 2018 and is cared for at home.
She said: “Nothing prepared me for the life changing impact caused by MND. There are so many obstacles, getting the right care is a battle. There can also be a lot of negativity and a feeling that there is ‘no hope.’ My short experience as a trustee has already brought me to feel that there is hope and much support. I am inspired by the dedication and commitment of everyone within the Association and the pioneering work taking place.
Debbie Martin, Liz Ellis, Dr Usman Khan and Jim Marshall
“I’m determined to use my own experience to help others affected by MND and as a trustee, contribute as best I can to the Association’s invaluable work.”
Debbie has worked in the NHS for 40 years and is a qualified nurse.
Her partner, Rich, was diagnosed with MND in February 2020 and died just 225 days later in September 2020.
She explained: “It is a real privilege to have been elected to the Board – the Association is quite amazing, and I’m delighted to be part of it.
“I want to use my experience to help others and drive the Association’s work forward.”
Dr Usman Khan and Jim Marshall were also welcomed to the Association’s Board of Trustees in May.
Jim was inspired to join the Board to continue the work of his wife, trustee Janis Parks who died in 2019. He will take on the role of Honorary Treasurer.
Dr Khan, who was diagnosed with multiple sclerosis (MS) 25 years ago, will use his experience of neurological conditions to further the Association’s work.
He is also the Association’s Chair Elect and will be working alongside the current Chair Richard Coleman until he stands down in 2022.
AS we approach the end of 2021 we do so with a real sense of hope and optimism for the future.
Throughout the year, the Association and wider community has once again pulled together in the most extraordinary ways, enabling us to continue raising vital funds, shout even louder about MND and push for meaningful change.
In September, a group of people living with MND were joined by representatives from the MND Association and colleagues from MND Scotland and the My Name’5 Doddie Foundation in London to discuss our #United2EndMND campaign with MPs.
Together we are urging the Government to invest £50 million in MND research to ensure we can turn the tremendous progress being made by our researchers into effective new treatments and ultimately, a cure.
Feedback from the event, which also saw a letter addressed to the Prime Minister, handed into Downing Street, appears to be overwhelmingly positive – but we will not stop until MND research receives the funding it so badly needs.
On behalf of the Board of Trustees, I would like to thank all those people living with MND who attended the event, all those who signed the open letter and all of our volunteers and supporters for getting behind this important campaign.
As we continue to work together, building partnerships with others and sharing our collective skills, we will build up an unstoppable wave of momentum which will propel us ever closer to our vision of a world free from MND.
The time is now. Richard Coleman, Chair
Drivers put MND research in pole position
Gideon Williams, who is living with MND, pictured at the start of the Karting4MND event. Picture: Jakob Ebrey
STARS from across the world of motorsport took part in a special race in August to help raise money for research into MND.
The Karting4MND event was held at the famous Thruxton circuit in Hampshire and was hosted by Racing4Charity’s co-founders, Bill Brabham and Bill Williams. The event was held in honour of Bill’s brother Gideon, who is living with MND and in memory of former racing driver Neil Cunningham, who died from MND in 2016.
The race, which saw teams compete for the Gideon Williams Trophy for winning the race and the Neil Cunningham Trophy for setting the fastest lap, raised more than £10,000 for the Association.
In another poignant moment, Salvo Cachia – a long-standing supporter of Racing4Charity, who also suffers from MND – managed to drive a lap of the Thruxton circuit ahead of the two-hour endurance race.
Co-founder Bill Williams said: “I am absolutely stunned at the level of support the return of Racing4Charity has gained here at Thruxton. I am so proud of the motor racing community for giving up their time and to the friends and family of Gideon, Neil and Salvo for getting behind the event, all in aid of the MND Association. Thank you all, from the very bottom of my heart.
“Every penny raised will help the MND Association further vital research to help thousands of people living with this cruel disease.”
David Brabham said: “The Racing4Charity team did an amazing job staging Karting4MND and I am so proud of what’s been achieved. I’m incredibly grateful to the motorsport community for racing together for this event, it was fantastic to see everyone having such a great time whilst making a huge difference for a great cause. The best thing of all was seeing the huge grin on Gideon’s face starting the race. Same again next year?”
Team Bennie and the Jets, with drivers Ben Davis, Tylor Ballard, James Duncan and Paul Streather, were crowned the race winners and the first ever recipients of the Gideon Williams Trophy.
The Team’s Paul Streather was awarded the Neil Cunningham Trophy for setting the fastest lap of the race.
For more information about future events visit Racing4Charity.co.uk
“Every penny raised will help the MND Association further vital research to help thousands of people living with this cruel disease.”
Unwrap some festive fundraising fun this Christmas
Helen Pounds and her daughters, Carys and Bridie, completing their virtual Santa run last year
THE countdown to Christmas is well and truly underway and there has never been a better time to show your support for people living with MND.
As the big day approaches, the MND Association has come up with a number of festive fundraising events for our supporters to enjoy.
During the weekend of 11-12 December we’re asking you to join our Virtual Santa Run and walk, jog or run 5k wherever suits you. Sign up now to receive your Santa suit and get ready to take part in the jingle jog!
If that all seems a bit too energetic, why not join our annual MND PJ Day on 15 December?
Bring some festive cheer to your office, school or online meeting, by dressing up in your cosiest Christmas pyjamas, sharing a selfie on social media and making a donation.
You your friends, family and colleagues could even donate to the Association instead of writing and sending Christmas cards to give people living with MND the gift of hope.
For more information about festive fundraising, visit www.mndassociation.org/festive4MND
We’re making changes to our online shop
AS we start to look ahead to Christmas, the Association is making some changes to its online shopping experience.
While this is happening we will only be accepting orders over the phone and online. For this reason we have decided not to produce a Christmas catalogue this year.
While there may be some temporary disruption during this period, our new and improved online shop should be fully operational again in November.
You can still make an early start on your Christmas shopping by visiting www.cardsforcharity.co.uk where a range of our festive cards will be available. Simply search for ’motor neurone disease association’ to see what’s available to purchase.
Keep up to date by visiting https://shop.mndassociation.org/ or the Association’s social media channels
‘I try to stay positive, no matter what’
Susan Cheese was diagnosed with MND two years ago. Here she shares her approach to coping with it, shaped by her background as a yoga teacher
“WE are all familiar with the brave and courageous sports people who are living with MND so know that this condition can strike the healthiest and fittest among us! I am a yoga and meditation teacher who was diagnosed two years ago with bulbar onset MND. I didn’t give up teaching straightaway, my body was still pretty strong at that point but my voice was fast disappearing, so I used the Predictable app on my iPad to type in the things I needed to say during my classes and played them to enable clear communication. It was marvellous. Then the pandemic struck, and the classes had to stop anyway.
I would like to share some tips with people who are living with MND, their carers, loved ones and friends about how to approach the condition in a different way. This has arisen out of my ongoing personal yoga and meditation practices. You see yoga is not just about having a good stretch or tying yourself up in knots! It is much, much more than that. So, I’d like to share some tips with you which I hope will be helpful.
If you don’t like it, change it. If you can’t change it, change the way you think about it! This has been a helpful statement to myself, and many others, over the years and really gives power to a positive outlook no matter what. We need to change our perception if the way we look at things drags us down or creates other negative emotions. And let’s face it, I’m sure we have all felt negative emotions in response to this condition, right?
There’s nothing wrong with negative emotions, we are human, we experience them and I’ve found that the best way to deal with them is to fully feel them as they pass through me but not to hold on to them. Let them go. How do I do this? By observing them, by knowing that I am not my emotions even though I feel them, by letting the earth absorb them.
We are probably all familiar with the phrase, ‘Every cloud has a silver lining’. Could it be possible that the MND cloud has a silver lining? I have certainly found this to be true since it has sharpened up my awareness of who I actually am, my soul, as my body diminishes, and my spiritual practices, which were already in place, have helped enormously, of course.
Now, not everyone has such practices and so I have some more practical tips too!
Acceptance: We are constantly being told that although research is being carried out, at the moment this is an incurable disease. So, we simply have to accept the condition and all the myriad changes that are happening in our lives as a result. Let us marvel at our ability to adapt to all these changes and at our creativity in the adaptations. Let fascination replace frustration: Does that sound crazy? Try it and see if it helps. When you feel that frustration arising, as we often do, stop and explore the source of the frustration, be fascinated by it - and then accept it!
Gratitude: Gratitude is a truly wonderful tool. ‘Count your blessings’ is a wellknown piece of advice, and it really works. Try keeping a journal, either a paper one, a digital one or even a virtual one (in your mind) and every day, in spite of all the struggles and challenges you have faced (and there are many!), note down at least five things which you are nevertheless grateful for. These will differ for all of us, depending on our circumstances and the progression of the condition, but here are a few ideas: • A roof over our heads • Food to eat (or in my case, pour down my PEG!) • Clothes • Family • Friends • NHS workers • Transport • Sight • Hearing • Other senses • A sense of humour
Laughter: It’s so important, turning the weird moments in our lives into sources of real amusement. For instance, when my husband first started helping me get into bed there were occasions when I ended up sprawled all over the bed in a state of collapse!
Positive affirmations: Or power statements! This condition can be very disempowering, if we let it, and a great way to counter this is to keep repeating positive phrases such as… • I am filled with strength • I am stable and balanced • I am confident • I can do this • I am loved • I see beauty everywhere • I am resilient You may think this is ridiculous, but it really works, so why not try it?
Mindfulness: Living in the moment, the here and now, not looking back sorrowfully at how life used to be or fretting about the future. Learn to accept and appreciate the present moment. Find the goodness in the moment. Let go of what was and embrace what is!
Spend time outside: Be in nature if possible, in a garden or even any outdoor space and appreciate the birdsong, the vegetation, the sky, and any other beautiful things around you. Fresh air is good for all of us and connecting to nature can be very soothing and nurturing.
You may have other techniques which help you and which you would like to share with others. The more we give to each other the better.”
“There’s nothing wrong with negative emotions, we are human, we experience them and I’ve found that the best way to deal with them is to fully feel them as they pass through me but not to hold on to them. Let them go.”
If you do have any tips that you would like to share with other members and readers of Thumb Print do get in touch. Contact editor, Clare Brennan at clare.brennan@ mndassociation.org
Professor Ammar Al-Chalabi and the MND Association’s Director of Research Development Dr Brian Dickie pictured at last year’s event
Eyes of the world focus on MND research
Dr Jennifer Doudna Professor Chris McDermott Steve Gleason
THE eyes of the world will be watching as the MND Association hosts the 32nd International Symposium on ALS/MND in December.
For the second year running, the event will be broadcast live from the Association’s offices in Northampton to a global audience of around 1,800 clinicians and researchers.
The four-day event, which is being held from 7-10 December – is a showcase of the significant progress being made across the world in the fight against MND and provides an important platform for collaboration.
As part of the programme, 13 experts in MND research and clinical care will provide an important overview of the work being done. Among them will be Dr Jennifer Doudna, who will be opening the Symposium with the Stephen Hawking Memorial Lecture, which aims to bring speakers from outside the immediate world of MND research, to stimulate new ideas and research collaborations. Dr Doudna is the Founder of the Innovative Genomics Institute in the USA. She is a biochemist at the University of California, and her groundbreaking development of CRISPR-Cas9 – genome engineering technology that allows researchers to edit DNA – earned her and collaborator Emmanuelle Charpentier the 2020 Nobel Prize in Chemistry. Her talk is titled CRISPR: The science and opportunity of genome editing.
In his talk, Optimising nutritional support in ALS/MND, Professor Chris McDermott, from the Sheffield Institute for Translational Neuroscience (SITraN) at the University of Sheffield, will talk about OptiCALS (Optimal Calories in ALS), a user-centred nutritional intervention to support people with MND to increase their calorie intake and guide healthcare professionals in assessing nutritional status.
The final talk at this year’s event will be from Steve Gleason, who is living with MND. Steve was diagnosed with MND in 2011 and, with his wife Michel, founded Team Gleason to help inspire others to thrive after diagnosis. He has since worked with global leaders in technology, campaigned for the introduction of two new laws, and received the Congressional Gold Medal, the highest civilian honour in the United States. Steve will talk about Technology to empower living with ALS/MND.
Registration for this year’s Symposium is now open and costs £60. Those registering for the event will have access to all the plenary presentations as well as additional oral presentations and around 300 posters in the ePoster Hall. You will also have the opportunity to take part in live Q&A sessions and engage with researchers.
For more information about the Symposium and to register, visit https:// symposium.mndassociation.org.
For more information about our speakers visit https://symposium. mndassociation.org
