To end MND Awareness month our final blog for our MND Research ‘blog a day’ is from Sally Light, CEO of the MND Association. After joining the Association back in December 2012 she blogs about her experience of MND research.
I have the fortune to meet lots of our members and supporters as part of my role and I am very frequently asked about progress with MND research – are there any new developments, are we any closer to understanding the disease or to new treatments?
Funding research
Funding and promoting MND research is a very important part of what we do. In fact it is one of our three mission areas – along with care and campaigning/awareness raising. Only through research will we one day achieve our vision of a world free from MND and so it is central to our work.
I have been pleased recently to be able to share that we have just had our biggest ever grants round with 21 applications, about a third of which we hope to be able to support. I have also had the pleasure of meeting a number of our senior researchers and some of the bright new stars that are joining the MND research community thanks to the funding that we are able to provide to them.
I spoke to one of them at our symposium in Milan and he explained the difference that the support of the Association has made to him – moving his work from a hand to mouth existence (never being sure where the next pot of money is coming from) to some stability and being able to commit for a known period of time to his work. It’s an important thing to be able to do and we are keen to do more.
Our strategy
Our new strategy, taking us to the end of 2016 sets out our goals and commitments for research, and our other two mission areas of care and campaigning/awareness raising. It’s an exciting agenda, building on the great work that has gone on before, but also adding some new areas such as an investment in whole genome sequencing and the development of a population-based MND register.
MND research is a complex and highly specialist area and for most non-scientists it’s difficult to understand and keep up with. That is why, as well as our work to increase the amount and quality of research and to support the researchers, I am proud of the Association’s role in translating the science into understandable language. This is vital to ensure people affected by MND can follow progress and get involved. It has been particularly good to have welcomed researchers to speak at our recent spring conferences – bringing what is new and current in their complex world directly, and in an understandable form to the people for whom it matters most. View and download our 2013 – 2016 strategy
Thank you for your excellent work Sally. I would like to know one thing. Howe many persons work for your association, payed workers, and how many of them have MND?
Hi Gudjon
Thanks for getting in touch and I hope you have enjoyed all of our research blogs during June. We currently have about 140 members of paid staff and 3,000 unpaid volunteers. None of our current paid staff have MND but three members of our Board of Trustees (which makes sure that everything we do is in the best interests of people with MND) have MND and most of the other Trustees have been personally affected by it in some way. I hope this answers your question – if not please do come back to me. You can email me direct at sally.light@mndassociation.org
With best wishes
Sally
Thanks Sally. Inclusion is one of our fights, Independent living, and a part of that is participation in life, employment included. Hope you consider this when you hire next time 🙂 Hope to meet you in Brussels and hopefully some UK patients as well. Best Gudjon