Developments in BioMOx

Medical Research Council (MRC)/ MND Association Lady Edith Wolfson Senior Clinical Research fellow, Dr Martin Turner writes about recent developments in his BioMox study.

Dr Martin Turner, MRC/MND Association Lady Edith Wolfson Clinical Research Fellow

Dr Martin Turner, MRC/MND Association Lady Edith Wolfson Clinical Research Fellow

My first ever blog. I decided to share developments in ‘BioMOx’ – the Oxford Study for Biomarkers in MND, which has been funded through the MND Association’s pioneering Lady Edith Wolfson Fellowship scheme (in conjunction with the Medical Research Council).

About BioMOx

Between 2009 and 2013, over 70 people living with MND (and some healthy people of similar age for comparison), took part in a new type of patient-based study. Men and women of all ages (from 28 to 86), some with primary lateral sclerosis (PLS) as well as a range of the more common amyotrophic lateral sclerosis (ALS) types, all gave up their time to attend for a day or two of tests in Oxford. Read the rest of this entry »

Taking part in BioMOx..

To end volunteer week, Katy Styles, who is a Campaigns contact for the East Kent Development Group of the MND Association, blogs about her and her husband Mark’s experience of volunteering to take part in the Biomarker’s in Oxford (BioMOx) study.

It started as an innocuous question following a neurology appointment at the Oxford MND Care Centre, Mark and I asked “Now what can we do for you?”

Following a phone call and some form filling, Mark and I had volunteered to take part in Dr Martin Turner’s BioMOx Project. Mark as a person with MND and me as a control of the same age.

We didn’t know what to expect as we were scheduled to take part in two days worth of tests, which included two scans and a written test. In between time in the scanners however, we were able to enjoy everything Oxford has on offer. Read the rest of this entry »

A healthy control – Dr Scott Allen

Dr Scott Allen is a Senior Post Doctoral Researcher at the Sheffield Institute for Translational Neuroscience (SITraN). Here he blogs about his experience as a research volunteer in an MRI scanner.

Today, as part of on-going work by Doctor Tom Jenkins and Prof Pamela Shaw at the Sheffield Institute for Translational Neuroscience (SITraN), I volunteered as a healthy control to have a full body MRI scan.

Mitochondria and MRI

Tom’s work is very similar to my own; he aims to determine whether there are differences in the way that people with motor system disorders produce energy compared with healthy volunteers. Mitochondria are known as the “powerhouses” of human cells and produce energy. Tom wants to find out whether there is evidence for abnormal function of these mitochondria by doing magnetic resonance imaging (MRI) scans of the brain. Read the rest of this entry »

Flying towards understanding: MND, TDP43, flies and a competition

Dr Frank Hirth King's College London

Dr Frank Hirth, King’s College London

The MND Association has funded a number of research projects in the laboratory of Dr Frank Hirth at the Institute of Psychiatry, King’s College London. His area of expertise is in using fruit flies to understand how motor neurones die in MND.

There is an opportunity to read a summary of some of his work through an online competition. The article is called ‘The TBPH gene – do neurodegenerative disease have a fly in the ointment’ and it is has been shortlisted forThe People’s Choice award , as part of the Access to Understanding competition.

Please go online, read the article, ‘like it’ and add any comments you’d like to, until a deadline of 12 noon on 24 March.

A background (but hopefully not a spoiler!) to this summary and the competition is given below:

Read the rest of this entry »

Have your say about research priorities

The relative of a close friend of mine is seriously ill with cancer. Supporting my friend and hearing of how their relative is, brings back memories of people close to me that have died. It brings back memories of what happened to them, how it affected me and my family. At the same time I find myself thinking – how would I react to approaching the end of life – would I want to know everything, perhaps I would want to concentrate on living and not think about dying too much?

Either as a relative or someone who has a condition, some of us would be on Google or talking to those around us, looking for answers and reassurance. For some of those questions there aren’t any answers available. Perhaps you can’t or couldn’t find the answers either?

Read the rest of this entry »

Twitter and MND

With over 140 million active users Twitter has grown up a lot since it arrived in 2006. This means that Twitter can be an extremely powerful tool for engaging, influencing and reaching out to a wide range of audiences across the world.twitter-bird-blue-on-white

Twitter is a social network (like Facebook and Google+) which allows you to network and engage with other users.

Anyone who knows me is well aware that I am a very keen advocate of Twitter. I believe Twitter is an excellent tool for engaging with, and getting people excited about science.

As a researcher Twitter can be used to promote and publicise your research (without having to travel to international conferences) and it also enables the public to raise awareness of important issues (like MND awareness month) and engage with the scientific and research community (@ALSuntangled)

As a researcher, Twitter can be used to promote and publicise your research (without having to
travel to international conferences) and find out what’s going on in your field – ‘listening rather than talking’ to your peers.
For more examples of why researchers should be using Twitter please see the post on our Research and Care Community Blog (ReCCoB) ‘Why you should be using Twitter’

Get involved

Our ‘Get Started on Twitter today!’ blog post also on ReCCoB explains how to join Twitter in five easy to follow steps. It covers everything from picking a name, deciding who to follow and sending your first tweet!

To get you started here’s some good examples of Twitter accounts to follow:

It’s OK to ask about MND research

The National Institute for Health Research (NIHR) has launched their ‘It’s OK to ask campaign’ which encourages patients and the public to ask about clinical research.

The campaign was launched on Monday (20 May 2013), ‘International Clinical Trials Day’ and the NIHR will be promoting this campaign throughout 2013/14.

“Clinical research is the way in which we improve treatments in the NHS. In many cases doctors will tell patients about research but we also need patients to ask about it and keep research at the top of the NHS agenda.” – NIHR website

Get involved in MND research

Mo LeCule the MND meerkat

Mo LeCule the MND meerkat

The NIHR is promoting the fact ‘it’s OK to ask about research’ and encourages patients or the public to ask their doctors about current research opportunities. The MND Association has a section on their website that lists ‘current opportunities to get involved in MND research’ and you can find out more here.

Getting involved in MND research does not only mean taking part in clinical drug trials. There are a number of other ways you can help including; questionnaires, tissue donation and fundraising.

“Last year, more than half a million NHS patients chose to take part in nearly 3,000 clinical research studies. Thanks to those patients, we are learning more all the time about how to deal with a whole range of medical conditions – and make some real breakthroughs that will improve thousands of lives.” – NIHR website

Share your experiences

The ‘It’s OK to ask’ campaign is encouraging patients or the public to share their experiences including what they asked and what response they received, via Facebook, Twitter (@OfficialNIHR #NIHRoktoask), phone: 0300 311 99 66 or email: oktoask@nihr.ac.uk

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