Our mission is to empower and enable patient & public involvement in motor neuron disorders research

News Archive: 2019

September 2019

Head Up neck collar

The Head Up neck collar designed to ease pain and make everyday tasks such as eating and communicating much easier for patients living with motor neurone disease (MND) is now available to purchase from TalarMade, please click on the following link to visit their website.

July 2019

How has SMND-RAG contributed to MND research?

The SMND-RAG group have provided valuable input into a number of local and national MND studies over the last few years. Below is an overview of a project that we have advised researchers or directly been involved in and the current outcomes from those studies.

Patient and public involvement (PPI): Led Dr Esther Hobson

Patient and public involvement (PPI) in motor neurone disease (MND) research was explored by interviewing members of the SMNDRAG and researchers who have worked with the group. The findings can make a valuable contribution to all aspects of research (e.g. the SMNDRAG ensured that research was more patient-focused, improved recruitment and improved the accessibility of the findings). Participating in PPI offered individuals psychological, intellectual and social benefits (e.g. positive impact on self-esteem, gaining knowledge of MND and treatments, social contact and comradeship). There are several barriers to participating in PPI and in ensuring that PPI is effective and meaningful were identified (e.g. lack of awareness or understanding of PPI, physical and emotional challenges associated with MND and limited time to seek PPI). The SMNDRAG had overcome barriers to develop a successful PPI group. Enablers identified included having a collaborative partnership with the researchers, promoting the group, allowing flexible involvement, having good administrative support and capturing the breadth of experiences. These enablers were incorporated into our recommendations for organising and running PPI groups.

May 2019

Zebrafish for MND drug discovery

The SMND RAG are thankful to Dr Alexander McGown who presented ‘Fishing for cures: Zebrafish for MND drug discovery’ at the last quarterly meeting.  Dr McGowan is working as part of the Ramesh Lab group at SITraN and their lab is focused on using zebrafish to identify novel therapeutics for the treatment of MND. 











Zebrafish are a fantastic organism for researching neurodegenerative diseases as they are genetically and structurally very similar to humans, meaning we can investigate human diseases in the fish.  Zebrafish lay hundreds of embryos which develop rapidly, including a functioning nervous system within 48 hours of development, meaning they are excellent models for doing large scale drug screens, something that would not be possible in common laboratory models, such as mice and rats.  We have developed multiple zebrafish models of MND for drug discovery, including for many of the major genetic causes of ALS, including SOD1, C9orf72 and TDP-43.

 Using the state of the art drug screening facilities at SITraN we have developed a drug screen that can be completed in 4 days and can screen over 400 drugs per week. Using the high content imaging and drug delivery systems we have optimised a screen for drugs that reduce toxicity in the central nervous system. Our initial screen investigated over 2000 drugs and identified a novel class of ion channel modulators that can reduce neuronal toxicity in mutant SOD1 zebrafish. We have now taken this forward and screened a further 5000 drugs to identify novel disease mechanisms and drug targets. The top hits our now being validated in behavioural testing and in other models to confirm the effects.

 We believe there is a space in the drug discovery pipeline where zebrafish can play a key role in finding new treatments. Cell models are fantastic for drug screening but lack the complexity of a whole living organism, whereas classical animal models, like mice, have the complexity, but are slow and cumbersome for drug discovery. We believe that zebrafish can provide a bridge between the two models leading to better therapies being tested and novel drugs being discovered to treat MND.

April 2019

New members welcome

Can you help researchers understand Patients’ & carers’ priorities?

The aims of the Research Advisory Group are to:

  • Enable the perspectives of patients and carers to be included in research proposals
  • Provide knowledge from each member’s experiences of MND
  • Identify and prioritise research topics from the patients’ perspective
  • Improve recruitment to research studies
  • Help identify improved treatments from research results
  • Give patients and carers a more authoritative voice
  • Help build public credibility and trust in clinical research
  • Improve the input from patients and carers to research projects
  • Identify any barriers to patient’s effective involvement in research
  • Comment on “Patient Information and Research Results Sheets”
  • Help write lay summaries for research proposals
  • Raise public awareness of MND research

If becoming a member interests you and you would like to find out more about the group (you would be welcome to attend a meeting and visit SITraN) please email Annette Taylor at smndrag@sheffield.ac.uk

The Person Specification, Terms of Reference and Membership Form are available to download here

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