Marion – incurable optimist

My reasons for being an ‘incurable optimist’ is the increasing amount of research being carried out and the number of researchers interested in MND and in collaborating to solve the mystery of this terrible disease.  

The difference now from when I started with the Association over 20 years ago (as a very young woman!) is huge. At that time, among other things:

  • there were no clinical trials at all and none in the pipeline
  • no gene mutations had been identified
  • researchers hardly ever collaborated and were a very select few
  • the symposium was in it’s embryonic stage
  • generally people just diagnosed were told to go home and put their lives in order – nothing could be done
  • I think the number of staff was around 13
  • Care and research centres were just the beginnings of a twinkle in the eye of Peter Cardy the Director (C.E.) at the time.

Progress, of course, has not been fast enough and it would have been brilliant if the cause/s, more effective treatments and ultimately the cure had been found.  However, we are moving in the right direction:

  • in 1989 around 40 UK researchers came together for a research conference in Solihull. This was the start of what today is the International Symposium on ALS/MND which includes around 300 presentations, attracting on average 800 delegates from around the world, all under the same roof for one reason. To fight MND and the effects of the disease
  • The budget for 22 research projects in 1989 was £211K, today the annual expenditure is around £2m on 45 research projects (this includes small grants)
  • 1996 Riluzole was licensed for the treatment for MND
  • There have been numerous clinical trials since – sadly mainly negative in terms of stopping or changing the course of the disease – but each adding a small amount of information to the bigger picture and helping to plan and develop future trials
  • There are now 18 care centres where people with MND can get the help and treatments available under one roof and health care professionals can call upon their expertise
  • Because of the above and the continued work and influence of the Association, people with MND and their families/carers now, in the main, get better treatment and are provided with more information to help them cope with the devastating news of being diagnosed with MND.

 Lots more needs to be and is being done and with the MND Association being the driving force, to ensure the needs of people living with MND are considered and met at every level there are reasons to be optimistic.

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