Category Archives: General

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POOLE KIT MEETING 21ST APRIL 2018

There will be a KIT Meeting at the Holiday Inn Express Poole on the 21st April 2018.
Holiday Inn Express
Walking Field Lane,
Poole
BH15 1RZ
we will meet for coffee at 10.00.a.m followed by a talk from Sunni Narayan, Senior Carer Advisor at Southampton Hospital. Lunch will be at 1.30.p.m. this is subsidised from our funds by £10 per head but there may be small additional amount to pay on the day. There is parking at the hotel and in the public car park opposite. To register please use one of the comment boxes on this site or use our Facebook page. We will have to let the hotel know final numbers two weeks in advance.

UPDATE

Delighted to say that this meeting is now full. If you have expressed interest, please confirm your attendance. If you have said you’re coming and now can’t make it, please let us know as places are limited. Thanks

KIT MEETING in the LEEDS AREA 17th March 2018

This will take place at the Milford Hotel,
Great North Road,
LEEDS
LS 25 5LQ
it will start at 10.30. With coffee and a buffet lunch will follow.
This will be susididised by £10.00 per head, there may be a small additional charge payable on the day.
Please let us know if you can attend either using the Facebook page.
If you need any support to attend please let us know by private message. Owing to demand and the limited amount of space it may not be possible to accommodate all people wanting to attend.

SITE UPDATE

A number of changes are being made offline to hopefully make the site easier to navigate. Until these are complete the site will remain in the same form it is now. During the work, over 6000 spam messages were deleted from the posts and comment sections and a spam filter has now been installed on the site to try to prevent any further attacks.
In looking at the site it is clear that Isobel Sutcliffe must have put in a huge amount of work and we must be very grateful for this.
Until the revised layout is ready we will continue to post on this site as it is as the revision are taking a great deal of time.
It is also clear that much of the content is in need of updating a and we hope to do this at the same time

A comment by Val Foreman on our recent KIT (Keep in Touch) meeting held at Cambridge

 

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We have just returned from a very enjoyable weekend in Cambridge which included attending an MFSN ‘KIT’ (Keep in Touch) 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 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, South East Regional Development Manager 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.

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