MND Awareness Month

I will never forget my first day at the Association office in Northampton in autumn 1996. I walked in and the relatively low number of staff that were based here were using computers with tiny six-inch green screens. I refused to learn how to use them and held out for the promise of a PC, which duly arrived in a couple of weeks. An email account took a further year though!

Our research team was just one and a half people back then. We were funding three research projects worth around £100k. Now our global portfolio numbers more than 80 and is topping £13m.

The advance of the Internet changed the research community almost beyond recognition and has helped both encourage and underpin collaboration and the sharing of information and new findings across continents.

Researchers cannot afford to operate in silos and this particularly true for rare diseases. The impact of international collaboration has been particularly successful in the search for genetic causes of MND, giving rise to initiatives such as Project MinE, one of the world’s largest gene-hunting programmes.

We recently had a meeting with an international computing company to discuss data storage and analysis. I had to Google on my phone under the table to find out what a petabyte was.

(It’s 10 to the power of 15 Bytes and apparently, we need 25 of them).

But while cyberspace is a fantastic tool and facilitator there is also much to be said for face to face contact outside of the lab or more likely away from the computer screen. What I call coffee queue collaboration remains one of the key reasons the world’s best researchers across so many fields attend our annual International Symposium.

Within three months of my first day at my empty desk, I was joining the jet set and off to our Symposium in Chicago. It was already well established back then but nowhere near the scale expected when we hold the meeting in Dublin this December. Delegates could top 1,000 and we are currently wading through 600 submitted abstracts.

The Association still has its roots in the branch system that evolved soon after the foundation of the charity in 1979. Despite our growing scale and influence as a charity and as a research funder I like to think we haven’t lost our sense of community and people often to refer to our ‘MND family’.

I am a regular guest speaker at branch AGMs across England, Wales and Northern Ireland. Understandably, most people affected by MND have a thirst for research news and the most frequent question I get asked is ‘are we any closer to a cure for MND?’

The answer is ‘yes, but I can’t say when’.

With an ageing global population, complex neurodegenerative diseases such as motor neurone disease, Alzheimer’s and Parkinson’s represent a significant scientific and medical challenge for the 21st century.

We have come a long way in the past twenty years in our understanding of MND. I am confident we will start to turn that understanding into effective treatments in the next twenty.

For more information about research at the MND Association see our Research Blog where during  MND Awareness Month (1-30 June), we will be publishing a new post each day celebrating the range of areas in which the MND Association funds research.