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February 2021 News

Hello to you all,

Well, here we are, at the start of another year and hope you are all safe and well. Let us hope with the Covid vaccination it will be a better one than the last 12 months.

On the TAG front it has been very quiet, although we still have received some donations which is lovely and thank you acknowledgments have been sent.

The lottery is going well, please see the following from Donna who has organized it.

"As you all know I set up an account with One Lottery in September 2020 to help us raise money for TAG. Lottery tickets are just £1 a week and 50p from EVERY £1 ticket you buy will be returned to TAG. You can win up to £25,000 every week, as well as great non-cash prizes, providing you with a more flexible way of supporting TAG. So far, we have 12 supporters and have raised £56.50 so a massive thank you to you 12. 

Congratulations to you all and thank you to those who donated your winnings back. This is the link should any of you wish to join www.onelottery.co.uk and search for Arthrogryposis Group."

We have not been able to plan any events for the year now, but fingers crossed we may be able to later once the Covid situation eases. Maybe something in the summer.

This brings me to our Family weekend currently booked for May 1st – 2nd. Unfortunately, due to the uncertainty of what is going to happen when Boris will be opening the hospitality industry, members still apprehensive to travel and meet up etc the trustees have, once again come to the decision to postpone this event. We have pencilled in with the hotel for October 23rd – 24th, we shall of course confirm this as soon as we can.

As far as the AGM goes, we are looking to hold this virtually via Microsoft teams, which is very easy to do. You would be sent a link and it will then take you to the meeting. The date for this will be sent as soon as we have things arranged.  On this subject if anybody wishes to put them self forward to become a trustee, we have three members already who will be joining the board, but we would like at least one more, so please think seriously about joining.

For TAG to flourish we need our members to really support us trustees by helping to do fundraising, attend events and give us ideas what you would like to see us do in the next 12 months.  You can get in contact with us either privately or by the email help@arthrogryposis.co.uk It is your charity and without the support of you, the members, then the trustees cannot perform our role.

The TAG clinics will still be running with us attending as before, however as with everything else Covid has stopped this and we are in the hands of the hospitals as to when we can return. Rest assured as soon as we know anything, we will let you know.

For our next newsletter, we want to involve you. If you have any exciting news that has happened or about to happen/information you would like to share etc please send to the email address help@arthrogryposis.co.uk  and we will include them in the next newsletter. The cut off date to receive your stories will be Friday April 30th.

After speaking with some members there seems to be a misunderstanding between TAG and The AMC Crew. We can confirm that as The AMC Crew are registered as a CIC organisation, they are a separate organisation from TAG and do not work alongside us. Any information or events they have coming up will be emailed out to their members and updated on all their social media platforms and their website. 

Hope this clears up any misunderstanding you may have. 

This finally brings me onto the sad news that we all heard about in December 2020 that our dear friend Steve Chambers had sadly passed away. He was a huge figure in TAG and I know an inspiration to many. With the loss of Steve in December and Matt Rangel in November the year ended on a sad note for TAG. Our thoughts and love go out to all their families and rest assured they will be remembered with love and thanks for all they did for TAG. We will never forget them.

So, it just brings me to say to you all, stay safe, stay well, and hope we can all meet up very soon.

Kind Regards

Vicki

On behalf of all TAG trustees


 


November News

Hi Everyone

Well we are almost at the end of another year, and what a strange one 2020 has been. Who could have predicted not only one lockdown but two?

Although the trustees have, like many of you been shielding, we have been keeping TAG plodding along. The end of year accounts has now been completed these will be able to view on the Charity Commission website within the next week or two. If anybody has any questions please email treasurer@arthrogryposis.co.uk and cc in help@arthrogryposis.co.uk

Financially we are looking reasonably ok, however I would urge all of us to try and do some fundraising for TAG.

On this note a huge thanks to Donna Davis who has been working tirelessly thinkingof ways to fundraise, the latest being a TAG raffle which has raised so far £135.52 which is great. If you would like to take part in our raffles, then they are uploaded onto our website as well as the Facebookgroup -
https://www.facebook.com/groups/252538902852487/?ref=share 

Donna has also set up a TAG lottery which is a £1 per month with lots of exciting prizes see TAG Lottery >>

I would also like to draw your attention to those who use Amazon, did you know you can nominate TAG to receive an amount from your purchase(s) It’s called Amazon Smile and very easy to set up. Please can I ask all our members to have a look into it. As the saying goes “every little bit helps”.

As many of you know we have our TAG family weekend set for the beginning of May, we have already had some confirmed bookings, and of course we are watching the Coronovirus situation very carefully and, where necessary will take advice as to any changes that may be needed. I am going to ask if you are interested in attending but are unsure at the moment please can you email an expression of interest to
help@arthrogryposis.co.uk this will give us an idea of numbers.

We have 3 potential new trustees coming onboard, Charmaine Rodwell, Mike Arnott and Luke Coggon so thanks to them for stepping forward. The voting will take place at the AGM in May. We hope to be able to have some get togethers next year as well as the Family Weekend but of course we are mindful again of the Covronovirusand the impact it is having on our plans.

Unfortunately, on a sad note the Trustees announce the death of Matt Rangel, she died on Saturday 14 th November. Matt was a very well-respected member of TAG and had been a huge influence on many members. She made donations to the charity through her t shirt printing and I know she will be deeply missed by all who knew her. A card will be sent to her family expressing TAG’s sorrow at losing one of
our members. Funeral details are not known at present although with social distancing I would imagine will be invite only. If donations are part of the funeral, I will ensure one is made on our behalf.

I would like to end this newsletter by wishing you all (as much as possible) a Merry Christmas and a peaceful and safe New Year.

Best Wishes

Vicki Adey


 


Trustees Update

NOTICE

The list of Trustees has not been updated for some time. To bring it up to date:

  • Peter Lacey resigned on 12 July 2020
  • Gail Newton resigned on 12 July 2020
  • Dean Broome resigned on 28 April 2020
  • Pawel Ziemba stood down at the October 2019 AGM

At the October 2019 AGM the Trustees were joined by:

  • Vicky Adey who became Treasurer and
  • Jane Rowlett

Elaine Chomyzsak was also elected but found she had subsequent time constraints and withdrew her nomination.

Trustees page >>


 


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


 


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