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Elaine Figgins

It is with sadness that I have to tell you of the passing away, after a long battle with cancer, of Elaine Figgins an Orthotist based in Glasgow. 

Elaine was very interested in TAG, and the condition, and the people with AMC. She was a lovely lady and very kind and helpful to our members, always willing to answer queries from people all over the country. Elaine also attended (and spoke0 at several events and conferences.

She trained as an orthotist and was a senior lecturer and subsequently head of department at the National Centre for Prosthetics and Orthotics at Strathclyde University, before moving to NHS Education for Scotland.

She developed an interest in Arthrogryposis whilst at Strathclyde and worked closely with TAG in the 1990s. It was through her influence and interest that we started the Arthrogryposis clinic in Glasgow and she was assiduous in attending before her diagnosis.

Peter


 


Message from our Chairman

Hi everyone

Here we are 2 months into ‘lockdown’ and I hope you are all keeping well, whether shielding, in self-isolation, or just being careful. I also hope the level of isolation you are in is not getting you down.

As you can imagine the Trustees have not had a lot do during this time, but we have not been idle, inasmuch we have been keeping up with Facebook, preparing the end of year accounts, answering emails, and maintaining some sort of contact with external organisations. We have been setting up Zoom between us and are experimenting having ‘chats’ electronically with the intention of having a remote trustees meeting.

I notice that Charlie Zivanovic and Matt Rangel – a couple of our long-term members – are also chatting through Zoom with other TAG members as a small group.

We hope with the PM’s easing of some restrictions will keep being extended and who knows we may be able to have a couple of regional meetings before the end of the year? I wouldn’t bank on it though.

Unfortunately, as you know we are not going to have our Family Weekend this year with its legally required AGM. The Charity Commission are allowing charities a lee- way of 12 months to carry over charity’s reporting because of Covid-19.

Dean Broome who has been a trustee for 3 years has decided to step down. Thank you, Dean, for the help, advice and your contribution to the trustees and TAG generally. He isn’t disappearing as he will continue to represent us at the AMC clinics in Oswestry, and Birmingham. Luckily, we have had 2 volunteers that have offered themselves to become trustees, thank you. 

However, we are still looking for more trustees so if you are interested then please contact us.

When we get back to ‘normality’ - whatever and whenever that may be – TAG would like to be ready to run. This especially includes the various clinics. Like the trustees we are still looking for volunteers that can represent TAG and chat to the parents attending these clinics with their children. We will of course give the simple training that’s needed to enable you to do this. Again, if you are interested please contact us.

I know we have to be sensible as many of us have underlying conditions so please be careful.

Best wishes from all the Trustees,

Peter 


 


February news

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.

______________________________

Vicki Adey is our new Treasurer
Vicki's introduction:

"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"


 


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