In New York

In New York

Wednesday, 18 March 2015

A World Free of MND

Sunday 15th March brought the AGM for our local branch of the MND Association, the West London and Middlesex Branch. It was a typical March day, bleak, cold and spitting with rain as we arrived. But inside all was warmth, light and friendly greetings - not to mention tea, coffee and cake. As always there were some new faces and it was good to feel that our experience might be helpful for those new to our MND Family. It's beginning to feel like we are 'old hands' now although still with every change in Roch's condition there is more to learn and there are more adjustments to make. I understand the need to compare, to find out if someone has a similar onset and progression - and how their journey has been. They tell you that everyone with MND is different and at first I didn't believe it but it's true - everyone with MND experiences it differently and that very difference can feel isolating. It's one reason why the Open Meetings are so useful, although it's not always easy to meet other people living with MND. It takes courage to show up there, especially the first time round. As always, we shared a moment's silence to remember the friends lost to MND in the past year. 

After the AGM business, which was handled with customary efficiency by Janis Parks (Chair) and other members of the Committee, we had the pleasure and privilege of meeting Sally Light, the Chief Executive of the MND Association. She gave an excellent talk and presentation, which was I found informative and uplifting - reminding us of the fantastic awareness raising with the Ice Bucket Challenge and as a result of the film The Theory of Everything, which has done so much to bring the reality of ALS/MND to public attention. It was good to hear how the money raised will be used by the Association. Members were consulted about this and I remember completing the questionnaire myself. Turns out that over 80% of the membership wanted money spent on research.  A good point was raised with regard to research money being spent on improving the lives of those living with MND as well as research into a cure and I understand that there are research projects looking at improving different aspects of life with MND now, too. In their talks, both Sally and Janis reiterated the goal of the Association - A World Free of MND. 

It is the 20th anniversary of our local branch this year and this meeting was also an opportunity for the Chief Executive to award Long Service Certificates to some of the Founding Members and also to our Branch Contact, Mandy Garnett, for ten years service to the Branch.  

On a personal level, I was flattered and pleased that so many people had read my story and are reading the blog. My writer's ego is a fragile thing, and to be asked if I was a journalist/professional writer and to receive so many compliments about my writing has given me renewed confidence. Many thanks to everyone who took the time to read the story and to those who visit these pages.  

Roch with MND Association Chief Executive Sally Light

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