Our meetings

Leeds KIT May 2019

Almost 30 of us met on May 18th 2019, at the Best Western Hotel, South Milford for a KIT lunch.  We had a Welcome in a small Conference room, nice to meet some new Members, and as usual a Raffle hosted by Carol, Tony and Alison.

We all had a lovely lunch and mingled chatting, and after the Raffle was drawn we said our goodbyes to old friends and new x



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Windelsham KIT April 2019

We returned to the lovely venue of Windlesham Golf Club for the second time on 13th April 2019 for a KIT meet up and had a really enjoyable day.  Morwenna Collins gave a really good talk on swallowing problems and everyone said how helpful it was.  We are hoping to add a video of her presentation here shortly.

The raffle prizes for the day were fantastic and we raised £120 towards our funds. Special thanks to Anne Phillimore who brought a large box full of home made cakes.  The donations given for these raised a further £108.

Thanks also to Judy Wood for the Forget-me-not seeds she brought for us all. Most appropriate for our group of friends!

Thanks to Rod for booking the venue and meals and to Val for her organizational skills.  Thank you to all our carers whether they are friends or family, we value how much they do for us.

Suffice to say, we had a very good day.



Cambridge KIT lunch March 2019

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Eighteen of our members had a lovely and lively KIT meet up for lunch at Zizzi’s in Cambridge on Friday 8 March.

After discussion with another member (Mina Joshi) of the Facebook Group, she pointed out that this large number of people sitting at one big table would make networking difficult. As a result, I asked Zizzi’s to put us at different tables instead of one great big one and that worked really well. It meant that those who could move around were able to do so, so there was a lot of chat between people who had never met in real life before.

I think I managed to speak to everyone and so did several other people. It was, all in all, a delightful KIT. I think (and hope) that everyone had a lovely time.

The food was not too expensive and the young woman who was looking after us was delightful.

If you haven’t been to a KIT in your area please try to get to one. It was a lovely experience

Debbie Epstein


Hertfordshire/Cambridgeshire Myositis meet up December 2018

A group of us decided after chatting on our Facebook Page that it would be nice to meet up and get to know each other personally.  We had a lovely meal and chat, and Jacqui had very generously made little parcels with chocolates in for us all.  We are hoping that we can organise another one in the spring time.

Meet Up photo

In the photo are (left to right):

David and Val Lyons, Lorraine Atkinson, Jacqui Durkin, Debbie Epstein, Lesley Coleby, Brian Durkin (Jacqui’s husband), Brent Hudson, Hilary Saunders, Cally (Hilary’s sister)

KIT meeting – Cambridge 9th April 2016

Val  Foreman writes:

We have just returned from a very enjoyable weekend in Cambridge which included attending an MFSN ‘KIT’ (Keep it Together) meeting on Saturday 9th.

When I was first diagnosed with IBM I shrank away from meeting other warriors “further down the line” from me. Having done so though, at a support group conference, I quickly realised how interesting and encouraging the information shared was, not only for me, but also for my carer/husband.

This latest meet-up was once again as informative and enjoyable as others we have held, due to the organisational skills of our Joy Walker and the excellent Holiday Inn venue. The hotel was ‘disabled friendly’ and the staff most helpful and accommodating.

The weekend started for me on the Friday evening when 9 of us, 6 of whom were staying overnight, had dinner together. It quickly felt like meeting old friends and we had a most enjoyable time.

We had a record number of 39 Myositis Warriors and their partners/ carers for the meeting the next day. After a meet and greet time over coffee, we were able to use one of the function rooms, complete with projector and screen for the speakers and plenty of room for our ‘equipment’?

Richard  Tear, Chairman of MFSN welcomed everyone and gave a brief but positive update on the progress of the group. He then introduced our first speaker, Andrea Russell, who is the area co-ordinator for a specific neuromuscular support service covering Norfolk and Suffolk.  Andrea said that this is a new initiative and it was hoped to roll out the service nationally.  She spoke about the work of the service including advice on swallowing problems, exercise, hydrotherapy, and available equipment. She mentioned a manual of equipment which is being produced in conjunction with Muscular Dystrophy UK. This was followed by a very helpful question and answer session.

Anneke Liefting then picked up on some of the points made by Andrea and shared about Muscular Dystrophy’s involvement and support for Myositis sufferers including an advice ‘hotline’. She also encouraged us with ideas on how to get involved with fund raising to help finance events like this one.

Finally, David Morgan accompanied by his assistance dog Dalton, stole the show by giving a description and demonstration of how Dalton helps him in daily life.

It was very hard to hold back from giving Dalton lots of fuss, we couldn’t of course while he was working!

A delicious lunch of chicken or salmon was served in the restaurant, followed by desserts and a time to chat and make new friends.

Update 12/4/16. We all had a great time last Saturday, up to 40 of us from as far away as south Wales sat down for two informative talks from MDUK and Andrea Russell. Then we went to the restaurant for a sit down meal which was great and very well catered for by the Holiday Inn. Lots of conversation and learning went on amongst new and old friends.

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