MSA Trust

Reflecting on MSA Awareness Month

Karen Walker, the Trust’s CEO looks back on a busy MSA Awareness Month, March 2016…

Gosh it has been a busy month during March – Services of Light, lots of support groups, fundraising events and the launch of our new website. The office has been pretty quiet with people out and about meeting people affected by MSA, their families and carers. I hope you found plenty of places where you were able to ‘wear your orange’ and spread the word about MSA. If you haven’t already please do email any pictures through to us on support@msatrust.org.uk.

I always find our Service of Light events a really moving experience as do so many others who come to remember and to light their candle for a loved one. The service is a time of reflection for all of those affected by MSA and I felt very honoured to be amongst those people and to share with them the hopes and aspiration of the charity to raise funds for research into this devastating condition. So I would like to take this opportunity to say a huge thank you to all those who participated, both in London and Manchester. To those who did a reading or a poem, I know it can be emotional but you all did so amazingly well, we were truly grateful and immensely proud of you all. It was also lovely to experience such a wonderful welcome from both Father Simon Grigg (London) and Reverend Nigel Armsworth (Manchester), who opened their churches to our diverse group, understanding completely our desire to hold a non-religious service to enable us to include as many of our supporters as possible.

After two Services of Light it was great to get the opportunity to attend a Support Group in Leicestershire and meet people who are dealing with all the issues that make MSA so very hard to live with. This group met in the Village Hall in Swannington and huge thanks to Alison Parish who not only set up the group and ran the first meeting, but provided delicious cakes for us all to devour! It was great to meet up with John Telford at the group, our lay person scientific blog writer, who took the time to come along and hear from people living with MSA, their families and carers all about their hopes for the research progress in MSA. MSA Nurse Specialist, Jill Lyons, was also with us for this meeting and I was glad so many people had come along with specific things they wanted to seek some help and support for. I hope everyone went away from the group feeling that they had got what they needed from the Support Group.

Please do feedback to Emma, Andy or I (you can contact us all on 0333 323 4591 or support@msatrust.org.uk) if you feel there are areas we are not covering in our information leaflets, our nurse service, our telephone and email help line that you would find helpful. We may not be able to tackle everything you request but we can certainly try our best.

So to everyone who took part in activities to raise awareness, wore orange, took part in the services of light or raised funds and donated money to the Trust, our heartfelt thanks to you all and here’s to the next MSA Awareness month.


Disclaimer: The views and opinions expressed in the blogs published on these pages are those of the authors and do not necessarily reflect the official policy or position of the MSA Trust.

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