Alun Owen is an Association Trustee (Chair elect). During Carers’ week week he writes about how he got involved in the Association, as well as his varied role as a volunteer and the importance of research.
Initially, I focused on fundraising activities as we had received fantastic support from the Regional Care Development Advisor and I wanted to make sure the money was there to help other people in the same predicament.
After the last 8 months, remarkably, I still knew very little about what MND was, why it occurred, why it caused such awful things to happen and how to try and make things better. Our experience had been one of daily dramas with very little time to focus on the how and why so it was only during my bereavement that I began to think about other aspects such as research and what it could mean for people living with MND. Wouldn’t it be amazing if a cure could be found? No-one else would have to experience MND ever again.
Spring conferences and the world of research
The season of Spring Conferences arrived and I booked myself into attending the one at Warrington, not really sure what to expect but I recognised fellow volunteers from my local branch and settled into spending time with them and discovering what the day might be about. There was a research presentation as part of the programme and it was fascinating!
What I now recognise as perhaps the ‘house-style’ of the MND Association meant that the most complex explanations were presented in an accessible and inclusive way, broken down into simple terms and then built up again to fully explain everything that was understood at that time about the possible causes and effects of dying motor neurones. I remember the phrases ‘multi-factorial’ and ‘grains of sand’ and the comfort gained from realising that against all my initial thoughts, MND is the result of a complex set of circumstances and external factors and therefore couldn’t have been avoided, was immense.
At the national conference later that year, I decided that just ‘tin-rattling’ wasn’t sufficient for me and that greater involvement was the key to not only helping myself but also everyone whose lives are affected by the occurrence of the disease. Watch the Manchester 2014 spring conference online here.
Fast-forward to 2009…
I have just been elected as a trustee and as such, I am able to help shape the future of the Association as part of the volunteer board members working with the different teams at David Niven House towards the common goal of ‘A world free from MND’.
I have learned so much about the need to carry out research into the causes as of course, this is the way to discover not only what genes do but also how lifestyle factors might impact on the likelihood of developing MND. Through the funding approved by the trustees, we now have around 50 different research projects and currently we are focusing on trying to identify ‘Bio-markers’ that will help with earlier diagnosis and developing models of MND that a laboratory can use to try and develop effective treatments. Find out more about the research projects funded by the Association here.
My other volunteer roles
However, my other volunteer roles of Association Visitor and as a member of the MND Connect helpline have also led me to understand that whilst we are working to find a cure, we also want and need greater equity in standards of care.
Visiting families affected by MND and the MND Connect helpline calls have highlighted many of the difficulties and challenges presented by the disease and to address this, our research has expanded to encompass investigations into the area of healthcare provision and best practice in supporting people living with MND.
As a trustee, I have access to the data that demonstrates the differences in care provision that occur across England, Wales and Northern Ireland and together with my colleagues, both volunteers and staff, I also have the opportunity to commission the necessary research to identify the problems and how we can make a difference. The trustee board listen to the relevant information on research topics and outcomes and using our range of experiences, determine where we need to go next to ensure best possible care and support for everyone affected by MND.
It is a bitter-sweet feeling for anyone who has lost someone to MND but as effective research explains more about the potential causes of MND – we have already identified 2/3 of the causes of the rare inherited form of MND (5-10% of total MND cases) – we know we are getting ever closer to finding out how to prevent the disease.
Our research programme is strong – our many partners contribute money and combined knowledge to increase the impact and effectiveness of the scientists and medical professionals – but as well as looking for the cause we are also identifying how to make life better for all those living with MND. Meeting people’s needs now whilst still striving to achieve ‘A World free from MND’. As a trustee and soon-to-be Chair of the Association, I know that we will make a difference and eventually find a cure.