Giving voice to people living with MND: Voice Banking

Phillipa Rewaj, Rebecca Devon and Shuna Colville from the Euan MacDonald Centre for MND Research, University of Edinburgh, help us celebrate Global MND Awareness day. This year’s theme is ‘voice’ and here the researchers provide us with an update on their pioneering ‘voicebanking project’, which is part-funded by the MND Association.

 

Ring ring….ring ring….

“Hello?”

“Hi there, it’s me.”

“Oh hello dear, how nice to hear from you!”

 

Sound familiar? How many of your friends or family could you recognise from a few words of their voice? Two, five, ten or more?

It may have never previously occurred to you, but our voices are as unique as our face shape, our walk and even our eyes. A person’s voice is an essential component of his or her identity.

Read the rest of this entry »

Human Motor Neurones

Dr Jakub Scaber is a Medical Research Council (MRC)/  MND Association Lady Edith Wolfson Clinical Research Fellow who works in Professor Kevin Talbot’s Laboratory at the Oxford University. Like Prof Chandran’s research, Dr Scaber’s fellowship is also investigating stem-cell derived motor neurones, here he blogs about his research.

jakub mn image

This is an image of motor neurons.

But not just any motor neurons – these are motor neurons that have been derived from skin cells of one of our patients who was a carrier of the most common mutation in the rare inherited form of MND (5-10% of total MND cases) – a mutation in the gene C9orf72. Read the rest of this entry »

A stem cell route to the roots of MND

Nina Rzechorzek's article 'A window into brain disease is only skin deep" was shortlistedNina Rzechorzek is based at the University of Edinburgh. In 2012 Nina’s article on Prof Siddharthan Chandran’s research was shortlisted for the Access to Understanding Competition. Here she gives an update on his stem cell research.

It was a typical morning – trying to juggle experiments, trying not to make mistakes, trying hard to get results….sometimes life can be very ‘trying’ indeed… but then I’m not affected by motor neurone disease (MND) – and what a privilege it is for me to be able to rush around, to go to work and, hopefully one day, discover something that can make a difference.  I am reminded of this as I stumble out of the morning into a less ordinary afternoon – stepping away from the bench and into the world of my boss, Prof Siddharthan Chandran. Read the rest of this entry »

The role of the Research Accounts Officer

Sylvia Bediako is the Research Accounts Officer at King’s College London. Here she explains about her job role and how she works with the MND Association.

The project process starts with our Pre Award Team receiving a request from the Principal Investigator (the main researcher involved in the research project), about their intention to apply for funds for a project from the MND Association. The Pre Award Team then prepare the budget costings and complete the application form, sending this off to the Association (before the deadline!). Read the rest of this entry »

CALL-Me. Care Augmentation by Location-Linked Messaging

Happy Father’s day! If you’ve got your dad a smartphone, or another hi-tech gadget, then this blog is perfect for you! Prof Ammar Al-Chalabi is a Professor of Neurology and Complex Disease Genetics at King’s College London. He is also Director of the King’s MND Care and Research Centre in London. Here he blogs about his Association-funded research into the development of a smart phone app for MND.

A new trial is about to launch to see if a smartphone app can help people with MND. What does it do and how could it be useful? Read the rest of this entry »

MND Researchers: England v Italy

Tonight England will take on Italy in the FIFA World Cup. It’s fair to say England look like they have pretty poor odds of winning the World Cup (yet alone getting through the Group stages!), however I’m sure many England supporters will be cheering on their team tonight as they take on the Italians.

As we’re posting a blog a day for MND Awareness month, in light of the England v Italy game, we introduce the MND Italian researchers line-up! We may support different football teams in the World Cup, but our Italian researchers are working together with our English researchers towards a world free from MND.

The Italian MND researchers

Photo x MND

The formation of Bendotti’s team is:

Bottom, from the left: Mattia Freschi, Massimo Tortarolo, Giovanni Nardo,Nicola Secomandi, Antonio Vallarola; Top, from the left: Martina Rossi, Beatrice Bosani, Caterina Bendotti, Valentina Torti, Maria Chiara Trolese

Our research mainly focuses on studying MND mouse models with the same gene mutation, but different disease progression (see our previous blog post). Our main research objective is to identify the key molecular pathways that modulate the disease course in these mice. This will enable us to develop reliable prognostic biomarkers of the disease and treatments capable of slowing down the course of the disease.

This work is carried out in a joint international collaboration with Prof Pam Shaw (University of Sheffield, UK) and Dr Andrea Malaspina ( Queen Mary University of London, UK ).

 Thank you for reading our ‘blog a day’ this Awareness Month. We would gratefully appreciate your thoughts and feedback via this short 2 minute survey.

MND Diagnosis: The utility of standard frame rate b-mode ultrasound imaging

Kate Bibbings is a PhD student funded by the MND Association, who is using ultrasound as a diagnostic tool for MND. Like Dr Martin Turner, she is hoping to speed up the diagnosis of MND. Based at Manchester Metropolitan University, here she gives us an introduction to her research.

B Mode ultrasound has been used a number of times to successfully identify muscle twitches. Recordings may be made of activity and movement within the selected muscle and analysed in order to determine the presence of muscle twitches. This has previously been done by individuals with experience in ultrasound video analysis and using the technique of manual identification/ classification. However, this is a subjective and time consuming technique.

My research

The aim of this study is to evaluate the performance of previously developed automated ultrasound analysis techniques, whilst investigating improvements or alternatives that may be used for the automated detection of muscle twitches. This will be done with the scope to making a diagnosis of Motor Neurone Disease whilst blinded to the actual clinical diagnosis, using only ultrasound images and the automated twitch detection technique. This will enable the viability of using ultrasound as a clinical diagnostic technique to be assessed and compared to the current technique of intramuscular Electromyography.

Currently, work is being carried out into investigating the effects of probe orientation and positioning on image quality (determined by such features as fascicle definition). It is hoped that this work will pay dividends when we begin collecting our first pilot data at Royal Preston Hospital, late July 2014.

KAte bibbings

The Muscle Function Lab at Manchester Metropolitan University

Thank you for reading our ‘blog a day’ this Awareness Month. We would gratefully appreciate your thoughts and feedback via this short 2 minute survey.

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 »

Running the 10K for MND research

MND Association part-funded PhD Student, Dr Tamlyn Watermeyer passed her PhD viva in February 2014. Here she writes about her 10K run in aid of the MND Association.

The last time I ran in a race was at my school’s sport day. I came stone last. In fact, while completing the 1200m the umpire started the next scheduled race while I ran past the 800m point because I was taking too long. Embarrassed but stubborn, I finished that 1200m; later salvaging my pride with a familiar cliché: “it’s not about wining; it’s about participating” – a handy outlook developed from always being picked last for the volleyball team. Fast forward a decade later, I still showed little athletic promise but, spurred on by New Year’s Eve merlot, I publicly declared my 2014 resolution to run a 10K in aid of the MND Association. So… publicly, there was no way out of the intense training schedule… Read the rest of this entry »

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