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Don’t Let Me Die Without A Voice
LAST month we launched our General Election campaign. Don’t let me die without a voice, to ensure that people living with MND get the communication support they need.
Over 1,000 people have already taken action. This is fantastic! Thank you to everyone who has joined the campaign.
But we still need your help
There’s still time to submit evidence to the All-Party Parliamentary Group (APPG) on MND’s inquiry into communication support for people with MND.
The Group will publish a report from the inquiry in early 2015. This is great opportunity for anyone who has experience of accessing communication support to share their story.
The APPG wants to hear from people with MND, carers, former carers, familymembers and professionals about their experiences of accessing communication support.
An online survey is open to help people share their experiences and takes 5-10 minutes to complete. Please help us promote this survey and encourage people to submit their stories. You can visit to take the survey online and download paper copies.
Contact the campaigns team at if you need support.
Please add your voice.
Alongside all our amazing volunteers who are supporting our General Election campaign, we are delighted to be joined by a special group of people who have been personally affected by MND to champion the campaign.
Standing behind Charlie Fletcher, who is the face of our campaign, our campaign champions are helping to make our message loud and clear: Don’t let people with MND die without a voice. You can read more about our campaign champions at
What else can you do?
If you haven’t already done so, please spare two minutes to take action by emailing your local candidates standing in the General Election, and ask them to commit to meeting the communication challenges faced by people living with MND. Please visit to join thecampaign.
Order new campaign materials Manifesto summary- a new easy-to-read summary of our manifesto highlighting our key policy areas and campaign asks is available. This could really help you engage your local candidates with the campaign.
MND Charter postcard for candidates
Give a postcard to your local candidates and urge them to sign our MND Charter as a signal of their commitment to work with us if they’re elected in the next Parliament. Keep a few by your front door for when they come knocking next year!
New Era for our DNA Bank
THE UK MND DNA Bank was set up in 2003 to find out more about the causes of MND, using DNA from donated samples.
Now, thanks to exciting new developments in research, the samples will soon be used more widely to further our understanding of MND.
Our DNA bank consists of over 3,000 samples, which were donated from people with MND, theirfamily members and healthy participants.
The exciting changes
Originally, we collected two blood samples. One was used to extract DNA, which is now stored at the University of Manchester. The second blood sample was sent to Public Health England in Wiltshire, to create an everlasting supply of DNA, which was done by storing the white blood cells from the sample.
Today, MND researchers are just as interested in the white blood cells as they are the DNA. This is because, thanks to advances in technology, these white blood cells can be used to create cell models of MND. White blood cells can be converted into ‘induced pluripotent stem cells’, which in turn can be turned into motor neurones. Creating motor neurones from blood cells was unimaginable when the DNA bank was first created. These models will be used to further our understanding of MND in the lab, but the samples will not be given to patients.
At the heart of research
We know that investing in research is important to people living with an affected by MND. This is why we have agreed for researchers to use the samples in wider MND research studies (more than just genetic research) to help achieve our vision of a world free from MND.
Dr Belinda Cupid (pictured right), Head of Research at the Association, leads on the project. She said:
“We’ve made great strides in discovering the genes that contribute to MND. There’s more to do, and DNA in the UK MND DNA bank will continue to be an important resource.
However, the next step is to understand why the genetic damage or variations cause motor neurones to die, and this means looking at these genes within cells, ideally motor neurones. It is significant step forward that we can use the cells from the Bank for this too.”
Withdrawing my sample
We have made the decision to allow researchers to use the samples more widely, because we believe that those people who donated a sample would want to invest in future research and advance our understanding of MND in order for us to achieve our vision of a world free from MND. However, we recognise that some people may not wish for their samples to be used outside of genetic research. Therefore, if you would not like your sample to be used in this way, or you would like more information, please contact the Research Development team on 01604 611880 or
Gather together at new Regional Conferences
Our exciting new programme of Regional Conferences will be launched in 2015, providing more opportunities for people affected by MND to gather throughout the year.
Regional Conferences will replace Spring Conferences, which have traditionally taken place from March to May.
Conference Manager, Pam Aston, says: “The new conferences will be more informal than our traditional Spring Conferences, with short presentations and plenty of time for meeting other people with or affected by MND.”
The events, whichwill also be live streamed to reach as many people as possible,will take place on:
1February-Reading
19April-North West
19July-North East
25 October -South West
More information will follow in Thumb Print
Care Information
The following information sheets have been updated and re-launched:
19 - Advanced Decisions to Refuse Treatment (ADRT)
22B - Direct payments and personalisation
22E - Work and MND
The ADRT sheet now includesa sample completed form and a blank form to fill in, if wished. An interactive version of the form is also available on our website. Order from
Research News
Surprise discovery- Researcher Dr Adrian Isaacs and his team at University College, London, have identified that the toxic proteins produced by C9orf72 are the main cause of motor neurone death in inherited MND and frontotemporal dementia caused by the C9orf72 mutation.
Dr Adrian Isaacs said: “Finding out that the proteins produced by the C9orf72 mutation were toxic was a complete surprise, as we didn’t expect this at the start. Our next steps are to find out exactly how these toxic proteins cause the motor neurones to die and go on to try and develop drugs that stop their production.”
The background to C9orf72
Most cases of MND are thought to be caused by a combination of environmental, lifestyle and subtle genetic factors. However, we know that approximately 5-10% of all cases of MND are inherited. This means that they are characterised by a strong family history and the disease is caused directly by a mistake in a specific gene. Of these cases, the most common form is caused by a mistake in the C9orf72 gene where a segment of DNA is wrongly repeated thousands of times.
C9orf72 was first identified in 2011 as being the most common cause of inherited MND and the related neurodegenerative disease, frontotemporal dementia. Since then, researchers have been continually trying to understand more about this gene and how it causes both MND and frontotemporal dementia.
Three fruit fly families
There have been a number of ideas floating around the MND research community about how C9orf72 causes these diseases. The most common being toxic build up of RNA (our cell’s copy of DNA that is used to make proteins) and toxic repeat proteins.
Dr Adrian Isaacs and his team used fruit flies to find out whether or not it is the RNA or the proteins that are the main culprit in causing MND and frontotemporal dementia (find out more about why researchers use fruit flies here).
The researchers investigated this by creating three fruit fly families, which each had slightly altered C9orf72 mutations: One fruit fly family only made RNA; another only made protein; and a final fruit fly family made a combination of the two.
By comparing these slightly different fruit fly families the researchers were then able to find out whether the proteins or the RNA were involved in motor neurone death.
Fly eyes
Not only did the researchers compare the survival of the flies, they also studied eye degeneration in the fly. Eye degeneration in the fly has long been used by neurodegenerative disease researchers as a ‘window’ into the brain. This is because in fruit flies the eye is an extension of the nervous system, with eye damage also accompanied by nerve damage.
The researchers viewed this deterioration using highly powerful microscopes, enabling them to visualise what’s going on inside the fly. Dr Isaacs and his team found that the fruit flies, which made both the RNA and the protein, had decreased survival and increased eye deterioration. However the fruit flies that only made RNA were able to survive with no eye deterioration, highlighting that RNA alone is not toxic in C9orf72 MND.
Interestingly, the researchers found that the fruit flies that only made proteins, had decreased survival and increased eye deterioration to the same degree as the fruit flies that made a combination of protein and RNA.
This shows that the main culprit in motor neurone death in this C9orf72 form of MND and frontotemporal dementia is the toxic proteins produced from the RNA, and not the RNA itself.
What does this all mean?
Dr Isaacs (pictured right) and his team have identified that the toxic proteins produced by C9orf72 are the main cause of motor neurone death in inherited MND and frontotemporal dementia caused by the C9orf72 mutation. Toxic proteins may be the main cause of motor neurone death, however, the researchers have emphasised that this does not completely rule out RNA toxicity.
Dr Adrian Isaacs said: “I’m really excited about this research as we’ve found what we think causes the most common cause of inherited MND and frontotemporal dementia.
“We previously believed that the C9orf72 mutation produced a toxic type of RNA, but our research has shown that the RNA on its own is not toxic to motor neurones, but the proteins are.
“Finding out that the proteins produced by the C9orf72 mutation were toxic was a complete surprise, as we didn’t expect this at the start. Our next steps are to find out exactly how these toxic proteins cause the motor neurones to die and go on to try and develop drugs that stop their production. This research may be still a long way from therapy, first we need to confirm that what is happening in the fruit flies is also occurring in humans, but it’s a start in the right direction for combating one of the most common causes of inherited MND and frontotemporal dementia.”
Investing Ice Bucket Funds
YOU probably know by now that the MND Association received an amazing £7 million boost thanks to the Ice Bucket Challenge.
As previously explained, these additional funds have enabled us to immediately start some projects in our strategy that had been scheduled to begin in the next three years.
This includes the provision of new Young Person's Grants. We hope these will make a small but significant difference to the well-being of young people and their families.
This area was unanimously supported by volunteers who annually review our MND support guidance.
We will fund up to ten grants per month of up to £250 per individual grant.
Grants could support extra-curricular lessons that have been impacted by the financial pressures of MND on a family, and used for anything from music to driving lessons.
Position / Name / Phone / EmailChair
Secretary
The young person must be aged 17 or under at the time of the application, resident in the household of a person living with MND, or have a parent or guardian with the disease.
The first deadline for applications is 30th November. For more information call 01604 611802 or email support.services@mndassocia tion.org
New Research Newsletter
OurResearch Development Team has launched a new quarterly newsletter – ‘What’s happening in MND research?’
Itprovides the latest research news, conference reports, updates on Association-funded projects and current opportunities to take part in research.
To receive the newsletter, contact the Research Development Team on 01604 611880 or
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