impact January 2016
HOW YOUR SUPPORT IS BRINGING US CLOSER TO A WORLD FREE FROM MND
Thank you for a brilliant Year of Action
In 2015, you made a real difference to the lives of people with MND. We now know more about MND than ever before. New genes and biomarkers have been identified that will help us conduct even more effective trials in the search for treatments. 2016 will be an exciting year in the laboratories, thanks to your support. At the same time, we continue to strive for better care of people living with MND and their families. Our first ever Carers’ Survey encouraged people to share their views
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and experiences and the results will inform our work in 2016. It’s also been another high profile year for everyone involved in the fight against MND, as three Hollywood actors joined us to help raise awareness. Over the page you’ll find more exciting news, but before we go any further – a huge thank you for making our work possible.
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impact
on research We’re taking the closest ever look at MND When someone shows symptoms that could be MND, it can take a long time for an accurate diagnosis to be given. Usually it’s a case of observing how someone’s symptoms are progressing, while excluding other possible causes. But thanks to your support, we could be closer to a quicker and better diagnostic test for MND. A team from the University of Edinburgh, led by Professor Richard Ribchester, is aiming to find a marker of disease progression, to speed up diagnosis, prognosis and disease monitoring. Using an incredibly powerful microscope and tiny probes, the team are hoping to be able to see exactly what’s happening inside a patient’s muscles – specifically, the neuromuscular junctions. The next step is to develop a safe fluorescent dye that will stick to the nerve endings, making them glow and easier to observe. If MND can be diagnosed earlier, then treatment can be started sooner and drugs can be tested at the early phase of the disease when they can be most effective.
£4 million invested in groundbreaking research Thanks to the generosity of our supporters, we were able to invest over £4 million last year towards a world free from MND. Together we funded 95 exciting projects, leading to a better understanding of MND and bringing us closer to new treatments and ultimately a cure. Your support also helped to launch an MND Register, that aims to collect and store important information anonymously about people diagnosed with MND. This will help researchers identify what might be causing the disease and look for characteristics that could help explain why some people develop MND and not others.
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More pioneering projects in 2016 With your support, we hope to take big steps towards a better understanding of MND this year. The worldwide genome-sequencing Project MinE continues apace. Thanks to your generosity, researchers in over 14 countries are now hunting for the genetic patterns that could hold the key to a better understanding of MND. A groundbreaking study known as MIROCALS also gets underway this year, thanks to your support. It will investigate whether an existing cancer drug is suitable as a treatment for MND in newly-diagnosed participants. Out of the laboratory, we will be collaborating with Marie Curie, a national charity that helps people living with any kind of life-shortening illness. Together, we will be conducting research into the best way to support people with MND, their carers and families, as they approach the end of life.
Your next donation could help fund our next breakthrough. Please send a gift today. facebook/mndassociation
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impact
on care
2015 survey reveals what carers really need ‘Exhausting’, ‘frustrating’, ‘draining’ were just some of the feelings we heard about in our first ever Carers’ Survey.
Some elderly primary caregivers were also worried that they might fall ill themselves, making them unable to care for their loved one.
Did you know that more than 50 percent of carers spend more than 100 hours a week giving care? Or that two thirds of carers receive no benefits?
Words are only powerful if they lead to action and the MND Association has identified clear, practical ways to help improve the lives of all people dedicated to caring. This will be an urgent priority for us in 2016. Thanks to you, we could soon start to hear words from carers like ‘rewarding’, ‘fulfilling’ and ‘proud’.
Speaking about MND Thank you for helping to support people living with MND through such an incredibly challenging time. Last year, your support helped us to distribute over 42,000 factsheets and publications and to answer more than 7,000 phone calls and emails. With your support, we were also able to develop an honest, yet sensitive ‘End of Life’ guide that has been a real comfort to people with MND and their families. The guide won the 2015 Patient Information of the Year Award from the British Medical Association. The award shows how important these publications are for people living with MND and we hope you are as proud as we are.
Together we will deliver even better care in 2016 Of course, we all agree that people with MND deserve the very best care. Thanks to the response to our Christmas appeal and funds from the Ice Bucket Challenge, we are in the process of recruiting four new specialist MND nurses and practitioners to give more families living with MND the coordinated specialist care they need. There are also plans to extend our Care Centre Network, with two
more Centres opening in the next two years. At every Centre, MND Specialists come together to give the best possible care for people living with MND and their loved ones. We will also be recruiting and training even more volunteer Association Visitors. The team is already 300 strong and 90 percent of people with MND said that they feel ‘less isolated’ thanks to the emotional support and practical information they offer.
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impact Movie stars make headlines for MND
on awareness and campaigning Speaking up for people with MND
2015 brought wonderful news in the fight to raise awareness about MND.
Last year you helped us to speak at the highest possible level on behalf of people with MND.
Critically acclaimed movie ‘The Theory of Everything’ sent awareness of MND soaring last year. We were delighted to welcome the film’s star, Eddie Redmayne OBE, as a Patron of the MND Association for the next three years.
‘Condemned to silence’ was the hard-hitting title of a report from the All-Party Parliamentary Group on MND, which was successfully launched at the Palace of Westminster in January 2015.
Long-term supporter Benedict Cumberbatch CBE, who starred in BAFTA-nominated TV drama ‘Hawking’, also became a Patron, and we welcomed rising young star Taron Egerton as an Ambassador.
Our social media campaign #SelfieAgainstSilence led to a meeting with Health Minister Norman Lamb MP. Subsequently NHS England promised to speed up access to communication aids for more people with MND.
With up to 5,000 people living with MND in the UK, we don’t need to tell you how important their roles will be in raising awareness about the devastating effects of this disease.
And after 33,630 supporters signed our MND Charter, the Prime Minister acknowledged the need for faster provision of services for people with MND.
Eddie Redmayne won an Oscar for his role as physicist Stephen Hawking, who has been an Association Patron since 2008.
Credit: Julia Childs
Glenn Phillips (pictured), who has DENISE SORT SHAPES! MND, helped actor Eddie Redmayne research his part for the film. The film’s star dedicated the award to ‘all of the people around the world battling motor neurone disease.’ Benedict Cumberbatch first contacted the Association for help researching his role as Stephen Hawking on television. He met people living with MND and heard their stories first hand. Taron Egerton sadly lost his Nan to MND in 2003. Last year he set up a special fundraising screening of his hit movie ‘Kingsman: the Secret Service.’
2015 was our Year of Action and you can expect even more in 2016…
Launching 2016 Year of Progress This time next year, we want to look back at twelve months where we made real headway in the fight against MND. We want to continue our groundbreaking research, outstanding care and campaigning to bring MND to the widest possible audience, but we can only do it with your support.
Every gift you send takes us another step forward. Please donate today
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