The group's mission is to empower and enable patient and public involvement in motor neurone disorders research

Latest News

September 2012

Yorkshire PPI event

Ann Quinn attended a PPI event in Yorkshire and wrote a short summary of the experience which can be read here.

SITraN nominated for design award

To celebrate the best new buildings in Sheffield the Sheffield Civic Trust has opened voting for the Peoples Design Award 2012 and SITraN is in the running.  Please register your vote for our world leading research institute athttp://www.sheffieldcivictrust.org.uk/designaward/ and help raise awareness of MND. The voting site will remain open until 12th November with winners announced on 27th November.

August 2012

INVOLVE poster accepted

SMND RAG are presenting at the 8th National INVOLVE conference ‘Putting people first in research’ which is being held on 13-14th November. The poster is intended to raise awareness of the group, its format and objectives and success to date.

MND On-line Training

DeNDRoN in collaboration with Motor Neurone Disease Association (MNDA) UK and Scotland have recently launched an MND on-line training package.This has been designed for researchers and health care professionals who are keen to improve their knowledge about the condition, its management and the potential for research into this disease. Resources and on-line tests have been developed to provide the learner with a holistic knowledge base of the condition which they can utilise to support their professional practice.

DeNDRoN’s Motor neurone disease (MND) Clinical Studies Group (CSG) have been essential in driving this piece of work forward. The MND training resource can be accessed through the website at http://www.dendron.nihr.ac.uk/researchers/training/.

July 2012

Clinic leaflet for patients designed and produced by the group

MND Research Leaflet July 2012.

Medicine at the Nanoscale Event

This event will provide an insight into how the Sheffield University is working on drug delivery for the future using nanotechnology. With the aim of improving treatments for diseases such as motor neurone disease, Alzheimer’s and cancer as well as improving gene therapy and vaccines. Anyone wishing to attend please contact Karen Bennett (k.bennett@sheffield.ac.uk or by phone on 0114 222 3693) to reserve you seat as numbers are limited.

June 2012

STH Website Features case study on SMND RAG

Sheffield Teaching Hospital NHS Foundation Trust have composed and published a case study article on their website to raise awareness of SMND RAG and MND. The article can be viewed here.

Head up Project – User and carer participation wanted

The Head Up Project is an attempt to develop a neck collar specifically designed to support the needs of people with MND who experience neck weakness. The project will take place over the next 12 months. During this period we would like to draw on the knowledge of individuals with experience of MND. We will be running regular User/Carer group workshops based in Sheffield where we will show the latest designs and plans for our new neck collar. At the workshops we will gain User and Carer feedback on the design and modify the evolving neck collar to incorporate the priorities of individuals with experience of MND. Workshops will take place in Sheffield thus individuals would ideally live within an acceptable travelling distance. However, those that live further a field or are unable to travel may be able to contribute by other means (home visits, email etc). If you would like to be involved in one or all of the following:

  • Attendance of 1-4 user/carer workshops in Sheffield
  • Accepting home visit discussions (South Yorkshire area)
  • Email correspondence/feedback/knowledge transfer

Please contact Andrew Stanton for further information on the following details:

Tel: 01142256766

a.stanton@shu.ac.uk

June 2012 is MND Awareness month

‘A Month for Optimism’ – the MNDA are running a campaign to increase awareness of the condition and raise money to support care services and research for MND patients. More information about these events can be seen here.

May 2012

SMND RAG in the News

Sheffield LINk (Local Involvement Network) has written an article about the SMND RAG to inform local people about the group and note that new members are welcome.  Sheffield LINk gives local people the chance to influence health and social care services in Sheffield, finding out what people like and dislike and then working with those who plan and run the services to improve them. Anyone living in Sheffield or travelling into the city to use health and social care services can get involved. Read the article on page 4 of the April 2012 bulletin.

LINk Bulletin 35. April 2012

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