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News from The Arthrogryposis Group (TAG):
 

Newsletter February 2020

Well, what a year 2019 was for TAG. We are powering ahead in many different ways. The main achievement is we now have over 600 members. It was only 4 years ago we had less than 80.

My favourite achievement of TAG is the success of the dedicated AMC children’s clinics that we have established or re-established. We now have clinics at Alder Hey Liverpool, Birmingham, Cardiff, GOSH, Glasgow and Oswestry. Because of our attendance at these clinics and the help and advice we give their patients, several of their consultants are suggesting an increase in the frequency of their AMC clinics. Indeed, Birmingham, Oswestry, and Glasgow are going ahead already

I am hoping too that we will restart our attendance at Great Northern Children’s Hospital at Newcastle after a hiatus of over a year. We now have been invited to attend Leeds AMC clinic. More on these two soon.

Talking with/negotiating with hospitals and consultants to start clinics for AMC children can, and does, take a long time. Currently, I am ‘talking to’ the hospitals in Bristol, Manchester, Norwich and Norfolk, Sheffield, and South of Thames London hospital. I am hoping by the end of 2020(!!??) we will have some more clinics running.

This brings me to one of my perpetual requests:

We do have some volunteers that attend these clinics but we definitely need more for the existing clinics mentioned above.  Before we go any further negotiating with the possible new hospitals listed above, we need volunteers for those too. We can’t have clinics if we don’t have volunteers to attend them on our behalf.

If you volunteer, I promise you it is stimulating, rewarding, and very worthwhile for all concerned, So, please phone me on 0798 9582249 for a chat or get in touch with us via help@arthrogryposis.co.uk or through Facebook.

Getting together

One of the things that is said to us continually by the mums and dads, and the children themselves is that they always want to meet others with AMC as they are rarely able to do so. To this end we arranged small gatherings for events around the country during 2019 with events as far afield as Plymouth to Glasgow. Some of these events were virtually not attended, and some were much better attended and we cannot work out the reasons for this? Perhaps you can give us some ideas for 2020?

For 2020 we are thinking of holding two larger meetings. One in the north of England and one in the south of England. We will have one in Scotland as usual too. I imagine Donna Davis, our Secretary, will hardly let Wales be bypassed by holding a small gathering there. Keep looking on our website and Facebook for details of these events over the next few weeks.

Our Family Weekend in 2019 was very successful but the attendance was disappointing - 35 families instead of over 40. However, we did succeed in getting one of our more experienced members – Vicki Adey back as our Treasurer. (See her personal introduction at the end of this newsletter.)

This is one of the reasons that the Trustees – especially Vicki and Donna - are experimenting for 2020 for our Family Day in the midlands at the Double Tree Hilton Coventry. You will have noticed it is a Family Day and not weekend. Let me assure you though that it is still on the Saturday and is a very full day similar to the Saturdays of our Family Weekend. The main difference being it is optional now if you want to stay at the Hilton either Friday and/or Saturday night or you can stay at one of several cheaper hotels nearby. Or not stay at all! Our Family Day page on the website lists several hotels that are available in the area. Another difference will be we are bringing in more active talks – as per BOCCIA last year – where you and the children can join in and learn something new.

Booking is now open for the Family DayDetails & Booking >>

Keep your eyes on the website, Facebook and emails for further announcements. 

Vicki Adey is our new Treasurer

Vicki says:

"Hi,

I am so pleased to be back on board with TAG. As many of you may know I have been onboard as a trustee before but this time I have a completely new role to before: Treasurer. I shall endeavour to look objectively at figures and do the best I can for you all whilst also giving you the opportunity to meet each other and have some fun. Please can I ask you all to keep supporting TAG, and, if everyone of us can do our bit of fundraising it will ensure we can continue to have the events that bring so much joy to all.

If anybody wishes to contact me with any questions, ideas or just to chat please email me on treasurer@arthrogryposis.co.uk

I look forward to seeing you in 2020

Vicki"

Hope to see you sometime.

Peter Lacey

Chairman of The Arthrogryposis Group 

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For more about The Arthrogryposis Group go to  www.arthrogryposis.co.uk or contact help@arthrogryposis.co.uk

Our address is:
The Arthrogryposis Group
1 Magor Hill Cottages
Magor Hill, Magor Downs
Tehidy, Camborne, Cornwall TR14 0JF
United Kingdom

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