Today marks 10 years since the MND Association’s research blog first started, making it our ‘blogiversary’. It officially began with a welcome post from our very own director, Dr Brian Dickie, which talked about the main purpose of the blog – to share what’s going on in the world of MND research and give you an insight into the work the research development team here does. The rationale behind this was to improve delivery of information relating to MND research and make it easier for the public and people affected by MND to understand any complicated science involved in research.
To date, we’ve published 541 blog posts – that’s an average of 54 blogs a year – with around 1000 views per post!
Within the blog we have covered a wide range of topics over the years, including:
- Important discoveries – such as repeat expansions in the C9orf72 gene, new genes (e.g. C21orf2 and NEK1), novel disease mechanisms, development of models
- Updates on clinical trials and research studies – such as the AMBRoSIA biomarker study, MIROCALS trial investigating IL-2, Lighthouse trial investigating the use of HIV drugs, gene therapies targeting SOD1 and C9orf72, the MND Register
- Latest drug developments and unapproved drugs – such as Drug repurposing, Copper ATSM, Cannabis-based products, ALSUntangled
- MND researcher interviews and guest blogs – including highlighting MND researchers of the future, our grantees, and researchers from across the globe
- Reporting from events – especially our annual International Symposium on ALS/MND
- MND Awareness Month series – ‘Blog a Day’ in 2014 and ‘Project a Day’ in 2016
- And many more – including our MND researchers’ ‘bake off’ competition!
We believe it’s important to maximise the amount of people who hear about MND research and share what researchers are doing… In the ten years, the blog has received over a quarter of a million visitors and currently over 1,000 followers (not including any social media followers of the blog!)
Back in 2010 we were in the middle of the global financial crisis, including one of the worst recessions ever in the UK, which presented us with many funding challenges. We and our supporters worked incredibly hard to push through and we came out a stronger and better organisation. For example, the decade saw the phenomenon of the ice bucket challenge and how it raised so much to fund many research projects, such as Project MinE – a large patient-driven initiative devoted to discovering the genetic causes of MND. Project MinE has led to the discovery of several MND genes and each gene found gives an insight into the disease process (e.g. GLT8D1 gene) to enable researchers to advance work into possible therapies.
Ten years later and we find ourselves in another global crisis (this time a virus), which is presenting fresh challenges for the MND research community – both researchers and funders. Now, like then, we will strive to fight for people with and affected by MND, we will continue to support our researchers and come out the other side stronger than ever. Despite researchers not being able to go to their lab and some clinical trials being paused to limit the risk of COVID-19 transmission and safeguard the health of people living with MND, we’d like to reassure you that MND research continues in some fashion (blogs to come from researchers explaining how!).
The MND Association’s vision is a world free from MND. Realising this vision means investing more in research, further developing partnerships with the research community, funding bodies and industry, while ensuring that advances in understanding and treating MND are communicated as quickly and effectively as possible. Our Research Development team work to achieve this, and we currently look something like this:
There are various roles within the team including those that focus on: our research grants, organising the International Symposium on ALS/MND, presenting at various events to both lay and specialist audiences, supporting our fundraising colleagues, and responding to enquiries from people affected by MND.
Principally, the research information team (Nick, Mandy and Riddhi) are involved in the blog and other communication activities. You might be thinking – that’s a lot of blogs for a small team to cover! If you’re a regular reader, I’m sure you’ve realised there have been several other contributors of the blog who have helped to develop it into what it is today. With it being a big blog anniversary, we thought it would be nice to hear from some with their highlights and what they’re up to now since moving on from the Association:
Kelly Edwards, previously Research Information Co-ordinator (2008-2013):
“Creating the blog was the biggest impact that I had on the Association. I couldn’t be prouder about that and to know that my legacy lives on.
“For me, the MND Research blog was also a pivotal moment in my career. It’s where I learnt behind the scenes of blogs, where I nurtured my writing skills and where I developed a passion for all things digital. Since then, my career has been focused on digital marketing and I am now the Content & SEO Manager for a group of travel insurance companies. So, in a way, I’m still simplifying complicated information.
“Ten years on and the MND Research blog will always hold a special place in my heart. My part of the story is only the beginning, but the story will go on until there is a cure.”
Martina Slapkova, previously Research Information Co-ordinator (2016-2019):
“I hope you have been enjoying reading the MND Research blog over the years, and that you were able to pick those stories that interest you the most – from scientific discoveries to researchers’ personal stories. I know from my own experience that it is no easy task to write these and the team are working hard to make sure they are of interest.
“I have had so many conversations with people with MND who inspired me through their strength and determination to fight this disease. I have been carrying this motivation with me even after leaving the Association. That is why I have joined the Exeter and East Devon MND Association branch, where I am privileged to volunteer with other motivated people. I am very lucky to see how the Association works at the more immediate level, raising money and awareness, organising and taking part in fundraising events and discussing how we can support the families who live in our region.
“On a professional level, I have now re-entered the world of research, and I am proud to work at the University of Exeter as a researcher in children’s mental health, while working on a career in neuroscience, which has been a dream of mine for quite some time. This passion has only been strengthened by working with several incredible researchers who spend every day working hard in the fight against MND and especially the Association’s Research Team leader, Dr Brian Dickie, whose relentless dedication to this fight is incredibly motivating and indeed infectious.”
Sara Bolton, previously Research Information Co-ordinator (2015-2016):
“My highlight from my time writing for the blog was the Project a Day series of posts in June 2016, which covered 30 research projects funded by the MND Association. It was fantastic to share how money donated to the Association was contributing to learning more about the disease and how to diagnose it at an earlier stage.
“Happy 10th Birthday MND research blog! Keep on sharing the great work being carried out by so many scientists, PhD students, research participants and medical professionals.”
Belinda Cupid, previously Head of Research (2000-2017):
“I met so many wonderful people living with MND while I was working at the MND Association, who were so generous with their time and their good humour. I never got complacent about the rapid progression of the disease, each time I heard that someone I knew had died, it gave me a renewed drive to do what I could to help.
“Writing for the blog was fun, thinking up themes to publish on and metaphors and analogies to use. The ‘blog a day’ posts during one MND awareness month and the reporting from the International Symposium are the posts I remember most.
“I’m working at the Cystic Fibrosis Trust now, but I keep up to date with what’s happening with MND research through twitter and by subscribing to the blog. People with CF have different challenges to those with MND, however, there are effective drugs that are finally available for them. My hope is that one day soon a people living with MND will have access much more effective drugs too. I hope the MND research blog continues to go from strength to strength.”
Due to the COVID-19 outbreak, many fundraising activities are being rescheduled or cancelled. But MND research carries on and still requires funding… If you can and would like to help support the researchers hunting for a cure for MND, why not become a Cure Finder? For a monthly donation, you can get a behind-the-scenes look into and exclusive updates from the front line of MND research. There are also ways in which you can help support people with MND whilst you’re social distancing at home – from ‘Virtual bakeit!’ to ‘Climb Mount Stairdon’ (please check out the Association’s fundraising webpage for more ideas).
Finally, we’d like to thank you for reading and supporting the MND Research blog over the years. We remain hopeful of finding the breakthroughs required in the fight against MND and look forward to communicating these to you. In the meantime, please donate if you can and watch this space as we’re currently looking into introducing some new features to improve your experience of reading our blog. If you have any suggestions of how we could do this, please do leave a comment or get in touch by emailing us.
We hope you and your loved ones stay safe.
To see support our emergency appeal, please visit: www.mndassociation.org/emergency
