Events

There are lots of TAG events scheduled for 2019 and more in the pipeline.

It's good to meet other members, make friends and have a fun day out together.

See TAG News & Events page for details of these and other events >>

Join TAG

As you can see we are an active group, both socially, providing support to members and families and also leading and assisting in research. If you have Arthrogryposis yourself and are not already a member, or if someone in your family or a friend has Arthrogryposis, why not consider becoming a member?

You can become a member by completing our registration form here >> or email help@arthrogryposis.co.uk.

Useful Information

We all need a bit of extra help sometimes. See our "Useful Information" page with loads of resources and information including Government benefits and concessions on offer to those with Arthrogryposis and people with disabilities generally.

Donate

Trustee News

Unfortunately we have lost Michael (our treasurer) as he has moved offices and moved house even further away from anywhere to the furthest reaches of Cumbria!

Obviously, Ana, (our Secretary) has moved with him too. They both felt it is a long way for them to come to our Trustee meetings. Thanks again to Michael and Ana for their help in the rebuilding of TAG.

Accordingly, Donna Davis has moved from being Vice Chair to being our Secretary. This means we are looking for a couple of Trustees one of whom could become our Treasurer. For this we are not necessary looking for a qualified accountant or accounting technician, although that would be nice! We need someone used to doing and being a treasurer for a comparatively small company or organisation’s accounts.

Please Contact Peter Lacey on peter.lacey@virgin.net or phone 07989582249 if you feel you could help as Treasurer or Trustee.

TAG Trustees >>

Upcoming events

We have lots of events planned for the Summer around the UK - Birmingham, London, Cardiff, Leeds and Telford - and others in the pipeline. See News & Events >>

So keep looking at Facebook and our website. Remember any of these meetings are open to you wherever you may live. You may just be visiting the area for instance. It is always great to meet other people with Arthrogryposis and other parents of children with Arthrogryposis too.

Just to confirm, our Family Weekend is on Saturday 19th October and Sunday 20th October and will be at the Jurys Inn hotel at Hinckley, Leicestershire. We were there 3 years ago, and it is a lovely, and very accessible hotel. More details >>

Fundraising

Just to remind you we are a charity and are dependent on donations and fundraising. For instance, we now have three people interested in running the London Marathon to raise funds for us. Is there anyone else out there who wants to join them? Or is there someone who would like to make a similar type of effort in their own town?

We have also had various other activities from which we have received donations e.g. thanks to Andy and Harry Newton for their Lands End to John O’Groats cycle ride who raised over £400 for us. Also see the article about Klasyczna Polonia. See photo below:

Arthrogryposis stand at the KP Car Show

Clinics

The big news is that we are about to have our very first AMC clinic in Cardiff on 5^th June 2019 which is very exciting and follows on from our new clinic at Liverpool Alder Hey Hospital last month. This new clinic was very successful and the staff there were very appreciative of our attendance and looking forward to seeing us again.

Unfortunately, due to certain senior members of staff and lack of understanding of our purpose in attending the clinic, we are no longer allowed to attend the Newcastle AMC clinics. Sadly, it is their patients – our members – who will lose out, but they do not care. We have been going there off and on for 10 years with no problems!

We are still looking for volunteers at the TAG clinics that are now being run with us in the following hospitals:

Birmingham Childrens Hospital – every month.
Glasgow Childrens Hospital – every four months.
Great Ormond Street Hospital – every 3 months.
Liverpool Alder Hey – every three months.
Oswestry – every 6 months.
Also, Cardiff now every six months.

All that is involved with this attendance is to chat to members – and especially prospective members – about TAG and how we can help, advise, educate and support through Facebook, website, and our helpline. You will be trained by one of us who have already attended an AMC clinic. These clinics last about three to four hours. Some are held in the morning, others in the afternoon.

If you can help at one of these hospitals then please contact me on peter.lacey@virgin.net or phone me on 07989582249 and I can explain what is involved. Which is not a lot really apart from empathy and information!

Teenagers Activity Camp

Regrettably, we will not be having a camp this year as there has just not been enough interest from our members, even after quite a lot of advertising. Thanks to Wil Morris for trying to get this off the ground.

I hope to see you at one of our events or get-togethers this year.

Best Wishes

Peter Lacey

Chairman of The Arthrogryposis Group