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June 2017

Dr Esther Hobson

My name is Esther Hobson.  I studied medicine at Cambridge University and qualified as a doctor at Oxford University in 2006.  I am currently a National Institute for Health Research Academic Clinical Fellow.  This has allowed me some time to concentrate on research during my training in neurology and I have been lucky enough to work at SITraN.

How and why did you get into MND research?
I was always been fascinated by how the brain works, how it makes us who we are and how much we still have to learn about it.  Caring for people with neurological conditions means being able to combine basic science knowledge and modern technologies whilst all the time thinking about the person and their family as a whole.  Looking after patients and their families whose lives have been devastated by MND made me want to try to help make their lives better.

What is it like working in SITraN?
Some days when I walk into SITraN it feels like all the greatest brains in the world are busy working together under one roof.  It is exciting to sit beside so many different types of people, from the doctors and nurses with years of experience at the bedside, to the laboratory and IT specialists who understand the intricate details of cells.

Can you briefly describe the research project you are currently working on?
I’m developing a telehealth system, using a handheld computer that patients and their families can use at home to communicate with their MND care team.  We are working with Cogent Healthcare Systems and other telehealth specialists within Sheffield University to create a finished product.  This has involved working with patients and families to understand what they need and how we can improve their care.

What do you enjoy most about your job as a researcher?
I like being able to think about things in detail and listen to the ideas and thoughts of others who are doing the same.

What’s been the highlight of your career so far?
Having the time I have now to dedicate my work to this project has certainly been fantastic.  I’m looking forward to seeing our finished telehealth product and seeing it in action in peoples’ homes.

Who do you admire the most?
Too many people to chose from!  All the brilliant researchers here know so much about things that I can’t even comprehend.  I also admired my grandmother who managed to qualify as a pharmacist in the 1940s despite being deaf.  She was really excited to hear about the work SITraN does.

What do you like doing in your spare time?
I seem to mostly spend my time looking for things that I have lost (keys, socks, gloves etc.) and when I’m not doing that I like mountain biking and running and dreaming about sunny, dusty trails and beautiful views!

May 2017

Edaravone (Radicava) approved to treat MND in USA – what does this mean for people with MND in the UK

On Friday 5 May in America, the FDA, the organisation that approves drugs, announced that they’d granted a licence for the drug known as a Edaravone (to be marketed as Radicava) for the treatment of MND.  It’s unexpected news and we’re currently working out what this means for people with MND in the UK.

Edaravone works as an anti-oxidant which helps remove damaging agents from the body and this prevents or delays cell damage.  In clinical trials, Edaravone has been shown to slow the progression of MND potentially helping people preserve function longer.

We are in contact with Mitsibushi-Tanabe in the USA and have asked them to connect us with their European office in order to understand their plans for licensing in Europe.

More information on Edaravone is available on the ALS Association website.  More information on clinical trials in general is available on our website and in our research information sheet.

As we learn more about the developments of the drug we will keep everyone updated.

Read more: MND Research Blog – Edaravone (Radicava) – What does this mean for people with MND in the UK?

New website released

New website released which gives support to People Living with MND about using non-invasive ventilation. Please visit the website via www.niv.mymnd.org.uk

February 2017

MyTube

The new MyTube website has now been released, please click here to visit the web-based resource for more information about feeding tubes.

NICE Guidelines update

Last year (Feb 2016) NICE published a national guideline about the assessment and management of Motor Neurone Disease (MND-assessment and management nice.org.uk/guidance/ng42) which aims to improve care for people living with MND from diagnosis to end of life.

It covers a number of areas of concern, making recommendations for practice based on the available evidence and recommendations for future research.

Some of the areas covered had been reviewed previously in a respiratory management guideline (Motor Neurone Disease – the use of non-invasive ventilation in the management of motor neurone disease. NICE CG105 2010) which made recommendations about diagnosis and multi-disciplinary team working as well as respiratory assessment and management.  These recommendations are included in this more comprehensive guideline (NG42) and where additional ones have been made this is indicated in the guideline (new for 2016).
Recommendations have been made for the first time in the following areas:

• cognitive assessment
• psychological and social care support
• planning for end of life
• managing symptoms including muscle problems, saliva, equipment and adaptations, nutrition and feeding tubes, communication including ACC and cough effectiveness.

These guidelines offer comprehensive evidence-based recommendations, providing patients and carers with the knowledge to make informed decisions about their care and placing a responsibility on providers (health care professionals and commissioners) to ensure equitable care and access to that care.

For more information please click here

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