Wednesday, 21 October 2015

Helping scientists to find a cure for MND



My name is Sarah and I'm a member of the Sheffield Motor Neurone Disorders Research Advisory Group (SMND RAG) hosted by The Sheffield Institute for Translational Neuroscience (SITraN)

My lovely Dad had MND and died in 2011, not long after I joined the group. My Mum and Dad lived with my family for the last year of Dad's life. My husband and I were able to help Mum with Dad's care, we were able to give Dad the love and care he had shown all of us. 

Sarah and her dad who had MND and died in 2011
 
I felt frustrated there was no real treatment for MND apart from rilozule which can only extend life slightly. While googling research into MND, I came across a write up about the SMND RAG on the MND Association website. I applied to join and honestly didn't think I'd be accepted, I don't have a science or medical background.  

Before I officially joined I was given a tour of SITraN by Emily, a group member and scientist who also lost her Dad to MND. Talking to Emily and seeing the fantastic facilities at SITraN gave me hope for new treatments and eventually a cure for MND. The group particularly needed people with MND and people who had cared for someone with MND to advise on research projects from a patient/carer perspective. 

I went home and told my Dad I was joining the group, MND had taken his voice but he put his thumb up to me in support. I told him that one day I could play a tiny part in helping the scientists find a cure for MND. 

As a member of the SMND RAG I get to meet other carers, people who have MND and professionals who have worked with people with MND. 

Sarah (right) and other member of the Sheffield MND RAG at SITraN
We meet every three months in person and have email contact in between. We review patient information leaflets and make sure the latest research is included. Scientist give us lay summaries of their research to make sure they are easy to understand without a science background. We give advice on how easy or hard it is for a person with MND to take part in a particular trial and look for ways to make it as easy as possible. My favourite part is when the SITraN scientists talk to the group about their latest research, they're so passionate about finding a treatment for MND. 


The group at work

The group are a friendly bunch and I was made so welcome from the beginning. We always have time for a catch up over lunch, with cake!  

I feel proud to be part of such an amazing team and I know my Dad would be very proud of me too.   


By Sarah Wyatt

Sarah is a Photographer based in Derbyshire.
You can follow her on Twitter @S4R4H999.


More information on research at SITraN and the Sheffield Motor Neurone Disorders Research Advisory Group can be found on the SMND RAG website or in the latest SITraN newsletter.

The group always welcomes new members, so if you would like to find out more please email: smndrag@sheffield.ac.uk

 

SITraN also hosts research advisory groups on dementia and Parkinson's.
For more information and to get involved please contact Annette.Taylor@sheffield.ac.uk



1 comment:

  1. Hi Sarah, I really enjoyed reading your clear description of your involvement with SMND RAG and how the Group is helping SITraN in its quest for a cure for MND. I'm sure other areas of medical research could benefit from a patient/carer input like this. Your dad truly would be pleased and proud.

    ReplyDelete