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

News Archive: 2012

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 ( 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

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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