Would you like to be involved in the decisions made about MND research studies? Do you think you could act as a delegate for people with MND? Become a volunteering patient representative for the UK Motor Neurone Disease Clinical Studies Group (UK MND CSG).
The UK MND CSG are looking to appoint a patient representative to join their group that is responsible for developing and monitoring portfolio of MND research studies in the UK.
The representative would have the chance to provide their perspective on new and upcoming clinical studies and to offer advice to other patients when requested. You would be required to take part in monthly teleconferences (approximately 1 hour long) and to read relevant meeting papers before these meetings (provided via email communication).
If you think you would be a good patient representative, please read the Terms of Reference (pages 11-12) to familiarise yourself fully with the role and the related duties. If you wish to apply, please send your CV and a supporting letter explaining why you are interested in joining the group to firstname.lastname@example.org by 21 May 2017.
For any further questions about this position, please contact Hannah Hollinger.
In 2012 I was contacted by the Alumni office of Sheffield University as I was a student there from 1966 to 1969. Whilst speaking to the student representative of the Alumni office, I mentioned that, whilst studying at Sheffield, I met my late husband who was also a student at Sheffield. He died of Motor Neurone Disease in 2011. The student arranged for me to visit the university taking in an open day at SITraN. I was extremely interested to visit SITraN and very impressed by the excellent research being carried out.
Whilst at the open day, I became an associate member of the group. I have been very interested in developments in research and feel that, if required, I am able to comment on the needs and experiences of patient and carer. I am also happy to proof read any documents.
I think my experience is as expected and I do hope to be able to visit SITraN again.
I am very pleased that SITraN exists. MND is a terrible disease.
The myTube website has been shortlisted in the nutrition resource of the year category of the Complete Nutrition (CN) awards. It would be good publicity for the website if it were to win it, so it would be great if you could give it your vote. You can cast your vote at:
The website was designed by patients living with MND and their carers, to support the decision to have a feeding tube placed. If you want to take another look at the website please go to http://mytube.mymnd.org.uk/
For further information please click here.
Members of the group received an overview of ALS reversals at a recent meeting, further details can be seen below:
Rick Bedlack, a neurologist at Duke University in Durham North Carolina, first encountered an ALS reversal in 2011, while leading an ALSUntangled review of Dean Kraft, an energy healer. On Kraft’s website was a video about a lady, who was reported to have been diagnosed with ALS and progressed to where she had lost nearly all movement and was near death. After two years of Kraft’s treatments, she was reported to have recovered most or all her motor function to where she could walk and use her arms normally. Rick was sceptical but nevertheless investigated. Her medical records suggested that her ALS diagnosis was correct and since then, Rick has found 22 additional ALS reversals and has started to focus further research into the area.
There is a precedent for his work: a study of people who are infected with the HIV virus but never get sick showed that many of them have the same genetic abnormality, which causes their resistance and helped researchers create a new drug that works for everyone with HIV. Rick hypothesised that there were 3 possible explanations for ALS reversals:
Rick has designed two new programs called Replication of ALS Reversals (ROAR) and Study of ALS Reversals (StAR) to help work through these hypotheses and received start-up funding for these from the Larry Vance Hughes ALS Foundation.
In the ROAR program, he is testing the exact same treatments that people with reversals tried in a larger number of patients. In the StAR program, he will be looking for ALS mimics in people with reversals, and will be comparing their genes to people whose ALS does not reverse.
So far Rick has found that ALS plateaus in disease progression and small brief reversals are not uncommon. On the other hand, large reversals lasting a long time are rare; using a US database of ALS patients, Rick found that less than 1% of 1000 ALS patients had an ALS Functional Rating Scale-Revised (ALSFRS-R) improvement of at least four points lasting at least a year. Identifying ALS reversal in patients is key for enrolling more patients into Rick studies which are of vital importance to trying to identify a common ALS resistance factor.
People can find out more at www.alsreversals.org
A new website is now been launched, aimed at supporting people who are thinking about getting a feeding tube fitted and people who would like advice about using one. Cathy Soreny (filmmaker and nurse) talks to us about a new project from SITraN that involved members of the SMND RAG.
Motor Neurone Disease can affect eating in various ways – such as affecting swallowing and chewing, or it becoming difficult to use cutlery. People can start to choke, get chest infections and lose weight. A feeding tube may be suggested during a visit to clinic. Feeding tubes – often also called PEG, PIG or RIG tubes – enable liquid food to be passed directly into the stomach. Quite understandably people often feel a little alarmed and confused when a feeding tube is suggested. What will it look like? How will it feel? How will we cope with using it? There can be many questions, and sometimes people delay having a tube due to their concerns.
Dr Chris McDermott’s research team at SITraN in Sheffield has been very aware about these worries. They conducted a research study called ProGas to find out more about the pros and cons of feeding tubes in MND. One element of this study was interviewing people about how they felt about feeding tubes – first when they were deciding whether to have a tube or not, and then after they had had it fitted. Many useful ideas and themes came to light, and the SITraN team wanted to make sure that this information could be turned into easy to access advice for anyone thinking about a feeding tube.
Chris approached me and my team to tackle this, as we had made the myNIV website a couple of years ago, where people could learn more about using non-invasive ventilation machines. For myTube we again worked with a group of people who were living with MND and their carers, so their ideas and voice would be at the heart of everything we did. The whole project was a collaboration between these people, filmmakers, web designers and clinicians. myTube has been funded equally by the MNDA (the local South Yorkshire branch and central office) and Sheffield-based Westfield Health Charitable Trust.
From February until July this year we held four half day workshops. We asked the patient and carer group for their detailed thoughts and reflection on the research findings, and how these issues affect them in their daily lives. One key idea really came out of our group discussions – everyone felt they never had the chance to meet someone with a tube before they had their own fitted. So they wanted the website to be a way to ‘meet’ people, hear about their experiences and see their feeding tubes in use.
The website developed into a collection of short films, featuring the myTube team in their own homes, talking about how they made their decision, how they feed with their tubes and useful troubleshooting tips. The films are supported by brief sections of text and a list of carefully selected resources from trusted organisations, such as the MNDA’s range of fact sheets.
We are extremely proud of how this project has come together over the past year and much credit is due to the wonderful group of patients and carers who contributed so much – ideas, insight, honesty, creativity and humour! We would like to thank them all for making myTube a success – Marlene and Trevor Leigh, Terry and Rose Hobbs, Jason & Liz Liversidge, Michael Hickman, Dave Booker and Brian Jackson.
You can take a look at myTube at www.mytube.mymnd.org.uk
We are delighted to announce the appointment of Michael Hickman as the new chair for the group.
Michael has a long history with the SMND RAG having served as a member since 2009 and will be an asset to the group moving forward.
The SMND RAG now have a presence on Facebook. For more information please click here
The ‘Sheffield Motor Neurone Disorders Research Advisory Group’ (SMND RAG) is a committee that brings together patients and carers from the South Yorkshire area who wish to be actively involved in ensuring patient and public involvement in Sheffield MND research.
If you are interested in becoming involved with the group you can access more details about the role and application form here or please contact us at email@example.com for more details. You are also welcome to attend a meeting and can have a tour of SITraN to see if you would like to become involved with this group
Feedback from Annette Taylor following her appointment as the new Co-ordinator for the SMND RAG.
“I am delighted to be appointed as the Co-ordinator for the SMND RAG. I have been involved with the group since it began in 2009 and look forward to the challenge of the new role.”