Each year, the MND Association dedicates the month of June to raising MND awareness. This year, we focus on the eyes – in most people with MND the only part of their body they can still move and the only way left for them to communicate. Alongside the Association-wide campaign, the Research Development team selected six most-enquired about topics, which we will address through six dedicated blogs.
We all know that rigorous research is the key to finding a cure for MND. Scientists are working hard every day to find the causes of MND, developing new treatments that would help tackle the disease and also looking for new ways to improve the quality of life of people currently living with the disease. But what does it take to have research at heart of everything you do? What is the typical day in the life of a researcher and what does carrying out a research study actually involves?
We asked eight researchers to give us an idea of what their research is all about and what their typical day looks like. Read about four of them in the following blog and keep an eye out for ‘Part 2: PhD edition‘ in the next few days…Read More »
Janine Kirby is a Non-Clinical Reader in Neurogenetics and is celebrating 20 years in motor neurone disease (MND) research this month. Here she tells us more about how she got into the field, her current projects, what it’s like to work at Sheffield Institute for Translational Neuroscience (SITraN) and to meet families affected by MND.
How and why did you get into MND research?
Having completed my PhD at University College London, I wanted to apply my knowledge of genetics to medical research. I subsequently joined the MND Research Group at the University of Newcastle-upon-Tyne, headed by Prof Pamela Shaw, looking at the frequency of genetic changes in the SOD1 gene in MND patients from the North East of England.
Since then, firstly at Newcastle and then at the University of Sheffield, I have provided genetic input to the research strategy of investigating the molecular basis of this complex genetic disorder. I am now a Reader in Neurogenetics at SITraN working not only on the genetics of MND but also using a method termed transcriptomics (basically which genes are being switched on or off, and by how much) to discover biomarkers for the disease and to understand why the motor neurones are dying.
20 years later I’m still here because it’s incredibly challenging and interesting research, with the opportunity to work with great colleagues and collaborators across the world.Read More »
It goes without saying (but I’ll say it anyway!) that it is important for MND researchers to know what each other are up to – so they can build on results, develop fruitful collaborations and avoid duplication of effort. The MND Association joining the UK PubMed Central (UK PMC) Funders Group is a new way of encouraging researchers to share more results and allow them to move further and faster towards a world free of MND.
The database offers an opportunity for anyone to track what we are funding, who we are funding and which research results were generated as a direct result of our funding. You can also find out which other members of the Funders Group are also funding MND research. These opportunities are in addition to the searchable list of ‘research papers’ that is UK PMC’s key function.
One way that researchers share their results with each other is by the publication of ‘research papers’. These are detailed, technical reports of what experiments were done, how they did them, what the results were and what the authors feel the results mean for their area of research. They are written in quite a structured way, that their peers will be very familiar with.
Where once these research papers were circulated exclusively in hard copy journals and catalogued on library microfiches (remember them?!) increasingly research papers are published electronically and stored and catalogued in online databases. Many of these databases only offer a summary of the research report to the general public; and a library subscription or a login are required to get the full research paper.
UK PubMed Central aspires to make as many papers as possible available in full, increasing the ease of access for researchers and allowing anyone else to read them too. We will be working with our grantees to contribute to this ambition. It’s all part of our drive to ensure that the best possible environment exists for MND research to prosper!
MND does not respect national boundaries and neither does our research efforts.
There are so many researchers, clinicians and health and social care professionals from around the world who dedicate their whole careers to unlocking the secrets of MND. What makes me optimistic about research, are the people who push research to the next level.
This can be seen through researchers collaborating with others on an international scale to push their studies forwards. They can also help to develop young PhD students into the new generation of researchers who will be able to bring new and exciting ideas to the table in years to come.
Being an expert in MND research is a big enough achievement in itself but by sharing their knowledge they can inspire others to achieve and ensure that the world of MND research is in safe hands for the future.
Seeing this inspirational optimism from the researchers themselves makes me optimistic about the future of MND research.