Congratulations to Jo Stone, who completed her run in the London Marathon in 5 hours, exhausted but triumphant.

This is her description of the event

‘I decided last year when I watched the marathon that I was going to run it in 2011 for MNDA.  I knew that Darran would want to be there to support me and I wanted him to have an “aim” as well as me.

I started my serious training in December once I had been given my golden bond place.  Sometimes it was hard making myself go out of the house at weekends – 4 hours running is a long time to be out when you have so many other things to do.  I have had so much support from my family and friends who came and looked after Georgia and Darran while I was training and they continued that support on the day.

The day itself was one of the most amazing experiences.   I felt scared being on my own – but I met two people, Dave and Kylie, at the start who were also running for MNDA and we swapped stories. From then on it was like running with friends on a Sunday morning.  I absolutely loved it – it was hard at points but I was lucky enough to see my family and friends at four different places along the route. This gives you such a boost, and when you run the last bit down Birdcage Walk and can see the finish I cannot describe the elation that you feel.  Having said before I ran the London Marathon that this was a one time experience – I have changed my mind and will run it again.

I have raised approximately £2,600 – but I think the final total will be higher as a couple of sponsor forms I have no idea at the moment how much money is on them.’

43 people attended the AGM

The chairman, Carol Rieley, gave her report highlighting the work of the branch over the past year.  The report covered how the branch raises awareness of MND, fundraises and provides support for people living with MND.

Emma Stolton from Bluebird Care was presented with an Extra Mile Award by Kirstine Knox.

Following the AGM Kirstine Knox  gave the following informative and interesting talk about the history, work, achievements and aspirations for the MND Association.

‘The Association has 3,500 volunteers and 155 staff and has two main focuses; to promote research around the world to stop the disease; and providing care support and information for people with MND and their families.

Top priorities for the Association are; research; lobbying the health care providers; and raising awareness at a public level and at a political level.

The research highlights from last year include Martin Turner’s work to develop a diagnostic test for MND, the funding of international stem cell research at Edinburgh University ,the creation of a Chair in Motor Neurone biology at Oxford University and the opening of two additional research centres – Edinburgh and Oxford (to join Sheffield and Kings).

Kirstine highlighted the importance of the work of the branches in providing support and care for people living with MND and reported that last year the branches raised over £2 million.

The Association is working hard to raise awareness of MND at the national and political level.  This is being achieved through the Association’s new campaigning website and national campaigns such as Sarah’s Story, Patrick the Optimist, the Stephen Hawking garden at the Chelsea Flower Show and through events such as the End of Life Care Summit hosted by the Charity’s patron, Princess Anne.’

Following the talk there was a question and answer session during which Julia Franklin paid tribute to Kirstine’s leadership of the MND Association and concern was raised about the imminent changes to the NHS and how people living with neurological disorders will be supported.

Finally Dr Steve Dyer, our new Branch President gave an overview of his work and what is important to him, his work and his patients.  He focussed on the importance of communication, how listening can transform lives and how he can help people to overcome fear through translating medical knowledge in to language that can be easily understood.

Many people visited the Art Exhibition at Staplefield Village Hall and although few paintings were sold a very satisfying £850 was raised.

Secretary Liz Carter and organiser Rachel Cowell of the Ginger Moo Gallery in County Mall, Crawley with some of the portraits painted by Patrick ‘the incurable optimist’ who intends to complete 100 portraits before MND forces him to give up painting.

These portraits will be on view in Rachel’s Gallery for another week.

Some of the visitors

Sam Hopkins is 19 years old, works as a landscape gardener and is keen on sport.  His mother’s best friend is one of our members living with Motor Neurone Disease so Sam ran his first half marathon at Silverstone on 6th March 2011 in order to raise money for our local branch.

He completed the run in 2hrs 1min and 45sec and raised over £500.

It was a great atmosphere with 10,000 people running for worthy causes, 60 of them for MND, and a lot of support from the crowd.

Well done Sam and congratulations!

The following was taken from the MND Association website

‘The MND Association is carrying out a review of many of the care services we provide to people affected by MND and those who care for them. The aim of the review to is ensure that these services are meeting the needs of people with MND, their families and carers, now and in the future.

If you are are living with MND, or caring for someone who has the disease, we want to hear from you. Your views about the services and support we provide are very important to helping us understand where we can improve in future.

To help you tell us your views and experiences, we have set up two very short surveys – one for people with MND and one for family members or other carers who currently provide unpaid support to someone with the disease. The survey is for people living in England, Wales and Northern Ireland.’

To take part in one of the surveys click on the following

http://www.mndassociation.org/life_with_mnd/care_survey.html