Guest Blog by Sally Light – Chief Executive of the Motor Neurone Disease Association

MNDA_portraits_343This month I celebrated my second anniversary of joining the Association as chief executive. The last year especially has been incredible, not least because of the small matter of the Ice Bucket Challenge.

It was all started by Pete Frates, a former baseball player living with MND, or ALS as it is more generally known in the States. It was spotted by some of our amazing long-standing volunteers from our West Yorkshire Branch. Paula and Robert Maguire set up a JustGiving page with an initial target of £500.

They thought that was an ambitious total but our MND family took up the (ice) bucket and ran with it.

They spread the Ice Bucket Challenge far and wide through social media including via our Twitter and Facebook and soon mainstream media caught up too. Within just a few days we were dealing with a deluge of interview requests from Sky to BBC World Service; from BBC Radio 5 Live to Radio 4; Reuters to the Daily Mail.

Wonderful people living with MND told their story too and huge thanks to everyone who did or said their bit – as well as actually doing the chilly challenge itself.  Suddenly the MND Association was in the eye of the viral phenomenon of the year and we made the most of it. Our social media co-ordinator hardly slept for re-tweeting and our VIP manager went into overdrive as more and more celebrities were involved too.

Notably Benedict Cumberbatch, a long-term supporter of the Association recorded a truly Oscar worthy IBC which was viewed more than five million times.

Staff at our main office in Northampton were inundated with requests for T-shirts as supporters held special Ice Bucket Challenge events and donations flooded in.

Our ‘little’ charity which was founded in 1979 by people affected by MND, saw the fundraising total jump from £60,000 to £1m over the Bank holiday weekend in August and then just keep on growing, with the final figure around an amazing £7m.

But it isn’t just about the money or the awareness raised it’s about something money can’t buy.. ‘hope’ as one son explained on Facebook.

“A year ago my dad Terry was a healthy 59-year-old… We have watched him deteriorate. He is now a prisoner in his own body.

Friends and family who hadn’t seen Dad for a while were shocked… It’s impossible to try and prepare them for the reality of MND. But then the Ice Bucket Challenge was born. Suddenly this disease was famous. It gave us strength and something this disease has never had to offer: hope.

“To see the whole world come together to raise money and shine the spotlight on MND for the first time, and for us to realise that we are truly NOT alone has been mind-blowing.”  (Jon Lee).

But if hope was priceless then there is no denying that the $200 million US dollars raised globally will mean that so much more research happens so much more quickly.

I am just back from our annual three day International Research Symposium in Brussels. The research presented in both formal presentations and poster sessions was impressive and showed great progress in many areas and so many researchers told me of the impact of the IBC on them too wherever they are based.

As always, it is the conversations outside of the formality of the presentations themselves which can really spark exciting collaborations right across countries and across specialisms too. They are the reason that people come back to the symposium year after year.

While it isn’t unique to MND, the connections we have between the clinicians and researcher is special, indeed often the lines are blurred because of the way so many researchers are also clinicians, many working out of our MND care centres.

Jean-Martin Charcot, the father of neurology was in part quoted by the winner of the International Alliance Forbes Norris Award, Dr Matthew Kiernan at the symposium.

“Let us keep looking in spite of everything. Let us keep searching. It is indeed the best method of finding, and perhaps thanks to our efforts, the verdict we give such a patient tomorrow will not be the same as we must give this patient today.”

It is such a pertinent quotation with regard to motor neurone disease and one that echoes our hopes at the Association as we head into 2015.

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