My overall enjoyment has been in seeing our team efforts come to fruition and in so doing meeting with a lot of kind people who have been affected by MND in one way or another.
I had the privilege of being chairman of the Yorkshire Dales Branch of the MND Association for 10 years, handing over to my successor in March 2009.
It was a most rewarding experience during which time I got to meet and know a lot of people who were dedicated to our cause including firstly a fantastic team of committee members and secondly those who suffered from this dreadful disease themselves whether as carers or those living with the disease.
I had originally been diagnosed with MND myself in 1997 and was expecting to follow the same path as those similarly diagnosed, but after 10 years and, unlike my fellow sufferers, with very little deterioration, I was re-assessed and re-diagnosed as not having MND but a variant which was theoretically treatable and therefore not terminal. Therefore, acting also during my time as chairman as branch contact, I was able to discuss the concerns of many families affected by MND and give encouragement by letting them know how slowly my progression was going. As one of my good friends once said ‘I want what you’ve got!’ Little did we know how relevant that remark turned out to be.
By combining the two roles I was probably more involved than I should have been in the running of our branch! In fact I have remained on the branch committee as branch contact since relinquishing the chair and so am still involved with talking to and helping people living with MND as and when they wish to make contact.
My main activity of chairing the Branch was obviously to oversee the raising of funds and the provision of care and social activities for all the members and at the same time making as much a contribution to research that we were able. We were extremely lucky during my time in office that we managed to raise some £300,000 of which over half was given to specific research projects in Birmingham, Newcastle and Sheffield Universities, and we were never unable to meet any demand for care support.
The income came from many social events, major contributions resulting from charity balls, walks and annual social events such as our Duck Derby and Country Fair. We were also indebted to a host of other volunteers who would arrange coffee mornings or whist drives amongst their own friends and send us a steady stream of cheques as a result of their endeavours. Other organisations that had lost someone through MND were also very generous in providing us with funding from events held in memory of the person who we and they had lost to MND, and that continues to this day.
I was also involved in the publication of our newsletter, here again with most of the work being done by a volunteer from the field of journalism, and we now distribute this three or four times a year to over 250 recipients. Through this media we are able to keep everyone up to date with forthcoming events and let them know any ‘good news’ in our battle to find a cure for MND.
I was fortunate to be part of a very active branch and, as a ‘hands-on’ chap, have enjoyed every moment of my term in office - although there were inevitably very sad moments but these were softened by the memories of those people who I had got to know quite well.
My overall enjoyment has been in seeing our team efforts come to fruition and in so doing meeting with a lot of kind people who have been affected by MND in one way or another. But, as with most voluntary organisations, we could always do with more help!