impact January 2017
HOW YOUR SUPPORT IS BRINGING US CLOSER TO A WORLD FREE FROM MND
Progress starts with you
Project MinE: new gene discovery reveals much about the causes of MND. You may remember a huge amount of press surrounding Project MinE last summer. Thanks to your support researchers identified two new genes linked to MND; C21orf2 and NEK1. This discovery has helped us gain a better understanding of why some people develop MND. The goal of Project MinE is to find all these rare mutations in genes that cause MND. Each MND gene that we find gives us an insight into the disease process and enables researchers to
Making your mark Update on Project AMBRoSIA
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look into possible treatments such as gene therapy – which involves replacing faulty genes or adding new ones.
open up new avenues of research across the world.” Dr Brian Dickie, Director of Research Development.
Project MinE is the first genome sequencing project to date and is a huge collaborative effort, involving researchers in 16 countries. “We are pleased to have been involved since this approach to gene hunting was in its infancy a decade ago. It’s so encouraging to see how the collaboration has grown and is now delivering results that will
Since the start of Project MinE in 2013 the speed of MND gene discovery has dramatically increased. In total the project has now lead to the discovery of 4 MND genes: TUBA4A, TBK1, NEK1 and C21orf2. We wouldn’t have been able to make these significant advances without your support.
Life-changing
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Our new MND study
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impact
on research
Thank you for “making your mark” on MND with Project AMBRoSIA Thanks to your support over £88,000 was raised towards the project so we’re now ready to find the ‘fingerprints’ of MND. Project AMBRoSIA is the biggest ever UK study into biomarkers. Biomarkers are physical indicators in the body which can be measured, and which are unique to MND. By finding these MND ‘fingerprints’, we can understand more about the disease than ever before – we hope to identify different forms of motor neurone disease and develop a faster diagnostic process – which will lead to earlier access to treatments.
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Professor Turner, one of the lead scientists involved in Project AMBRoSIA, is confident that vital clues about MND are waiting to be found:
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3 Research Centres
“I’m absolutely motivated to see that we finally develop treatments, if not a complete reversal of this disease.”
Your gift today could fund tomorrow’s ground-breaking MND research.
The latest in ground-breaking research – thanks to you You’ve helped to progress innovative MND research, including a brand new way to measure changes in the disease. Muscle twitches (fasciculations) can happen to anyone, but they are a common symptom of MND. For the very first time, researchers will be able to study the changes in fasciculations as MND develops. We hope these fasciculations could be used as a biomarker and will be able to predict whether a newly diagnosed patient has fast, moderate or slow progression of the disease. Donations like yours helped Dr Bashford, from King’s College London, to develop a more effective and less invasive way of measuring muscle twitches using high-density surface electromyography (EMG). Dr Bashford hopes to eventually make his tool into a wearable garment that can be used in the patient’s home, and could accurately reflect disease progression and identify positive drug effects.
“This could be a valuable clinical tool, used to help test and progress new therapies. After all, that’s what really counts for patients and their families.”
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900 Participants
Over the next five years, over 250,000 samples will be taken and over 900 participants will help in the search for vital answers about MND.
UPDATE: You’re helping us to reach more people across the country MND affects an estimated 5,000 people in the UK at any one time, however the true figure is unknown as there is currently no way of recording this information. The MND Register is a major five-year project that aims to collect and store information about every person living with MND in England, Wales and Northern Ireland. The secure database has now been constructed and the information collected will be used to reveal which parts of the country need more MND care services, and help to connect people to researchers and clinical trials.
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impact
on care
You supported people living with MND – thank you Last year, you helped to provide 1,172 grants for equipment, financial support and respite care. Thank you for being there for people when they needed it most. You made all the difference to people like Delwyn, whose story you read at Christmas. They were just one family who were helped by an MND Care Grant. Soon after Delwyn was diagnosed with MND, her mobility started to deteriorate and she developed breathing difficulties. Delwyn’s daughter, Kerenza, applied for a grant towards a riser-recliner chair, to help her be more comfortable.
The Support Grant didn’t just provide them with equipment – it also helped the family enjoy one last holiday together, in accommodation specially adapted for Delwyn. Vital support you helped to give: • 813 grants towards buying essential equipment • 745 pieces of equipment loaned out • 238 young carers grants awarded
These support grants are invaluable – and they’re only possible thanks to your generosity and dedication. Please, give today so that we can give more of this vital support.
NEW MND Alert Wristbands A new MND alert wristband has been created so that paramedics and emergency hospital staff know when someone has MND and may be at risk with oxygen. They are included in our free Living with MND guide. If you’d like a free alert wristband, please call our MND Connect helpline on 0808 802 6262.
Online courses: how your support is improving MND primary care Thanks to your support, we’ve been able to produce online courses to help GPs and nurses improve care for people living with MND. Our first online module, An introduction to MND, helped to educate GPs to recognise the early signs of MND. It was a huge success – over 800 GPs accessed the tool for advice. Now we’ve developed two further courses to help GPs and nurses understand the symptoms of MND in more detail.
improving care for people living with MND. We hope that these courses, created thanks to your support, will drive crucial improvements in care across the UK.
Increasing the number of health professionals that understand MND and its progression is crucial to
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“I am very happy with the advice and help given by the Coordinator. She is always available and extremely helpful.”
From 2016 MND Association Care Survey
MND Care Network Update The new Sussex MND Care & Research Network is now up and running. For people living in Sussex, there is now a specialist coordinator they can turn to to ensure best treatment as well as advice on how to access practical care and support to match their needs. Thank you for helping to provide the very best of care, and look out for the opening of the next Care Network in Norfolk early in 2017.
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impact
on awareness and campaigning The financial impact of MND Our crucial new study will report on the financial impact an MND diagnosis can bring, for the individual and the people that care for them. MND can turn lives upside down so fast. Within weeks or months of diagnosis, people living with MND may find themselves unable to work, or support their families or having to pay for equipment or adaptations in their homes.
Our new research study will help us understand fully the financial impact of MND on people and families, and enable us to campaign to reduce gaps in care and support.
When MPs met people living with MND Recently 100 branch and group volunteers travelled to Westminster to ensure the voice of people living with MND was heard, loud and clear. Over 55 MPs attended our parliamentary reception, as well as Penny Mordaunt MP, Minister for Disabled People, Work and Health, and heard first-hand about the issues that affect people living with MND, their families and their carers. Politicians also heard from Dr Jane Hawking, the first wife of our patron Professor Stephen Hawking, and from artist Sarah Ezekiel, who is living with MND.
More councils championing the Charter
The event enabled us to raise several important issues, including raising our concerns over proposed changes in the Attendance Allowance – a disability benefit for people aged 65 and over. Thanks to the support you give, we are fighting to ensure everyone living with MND has the support they need, when they need it.
We’re pleased to announce that 28 councils have now adopted the MND Charter after 3 Councils adopted the Charter in the run up to Christmas – Northampton, Suffolk and Oldham. The Charter raises awareness of MND locally, to ensure people receive the right care, in the right place, at the right time.
Thank you for being a supporter, for standing with us and ensuring our voice is louder than ever.
Encourage your council to adopt the Charter, or check if they already have, by visiting www.mndcharter.org
In 2017, the MND Association is determined to be there for more people >>> with MND. You can provide essential care and help support research that could lead to a world free from MND. Please donate today.
Registered Charity No. 294354 © MND Association 2017 Impact News 17JA
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