
In this issue of TAG Talk we will cover:
Family Weekend 2025
Family Weekend 2024
Project Updates:
Membership Database
Expert Patient
TAG Presence at AMC Clinics
New TAG hoodies, t-shirts and bags
A thank you from TAG's founder, Diana Piercy

Please click this link to complete a very quick (about 30 seconds) survey sharing with us your preferred location for the 2025 TAG family weekend: Click Here
Voting will close at midnight on Sunday 24th November 2024. The trustees will then use the information from this survey to select and book a hotel. We hope to confirm a date and location, and open booking by the end of January 2025. More news to follow...
It's hard to believe it has been a month since out Family Weekend 2024. Thank you to all those who joined us for our 40th birthday celebrations. We have had some lovely feedback during the weekend and via e-mail since and will be sending out a quick feedback survey to this who attended (this will be sent to the e-mail you used when you booked).
To those of you who didn't attend we would love some feedback about why the family weekend wasn't for you this year. We would be really grateful if you could take a moment to complete this quick survey (it should take no more than 1-2 minutes, and there is no need to give your name).
Feedback from members who did not attend 2024
Feedback from members who attended 2024
Here is a little snap shot from this years family weekend...


It was great to have some very important guests join our celebrations.
On the left we have 6 of the founding members; John, Anne, Diana, Micky, Gail and Lawrence; and on the right we have Richard, Sarah, Nancy and Mike, who all attended the first family weekend.


Over the course of the weekend we were joined by the the Para Ice-Hockey team, The Sheffield Steel Kings (click here to find out more about the Steel Kings) and Gill Hawketts from Boccia England. A big thank you to them both for their time and expertise.






We have a number of projects currently on the go under the TAG umbrella. This area of our newsletter will provide updates on project progress.
Membership Database: Updating this is a top priority for the trustees to ensure it falls in line with GDPR guidelines. We are therefore asking all members to complete a new membership form, this will help us to make sure we have the most up to date details and also ensure we have your informed consent to store these details. The old membership database will cease to exist after midnight on the 31st December 2024, so please use the button below to access the new membership form and make sure you remain registered as a member...

Take me to the Membership form
Alternatively, you may decide that you would like to continue to receive TAG newsletters, stay up to date with TAG news, be invited to public events and support TAG as a Friend of TAG rather than a member. If this is the case please register your details here: Register me as a Friend of TAG
The response from all involved in this project has been fantastic and we would love to replicate this with other universities/training centres. If you have any links with a university or training centre offering places to medical professionals please let us know. We are in the process of putting together an information pack to send out explaining the project in the hope to get more universities/training centres involved. We will then ask for volunteers in the area of any universities/training centres who would like to join the project.

TAG Presence at AMC clinics - This is sadly something that has taken a hit post Covid. The clinics rightly stopped during the pandemic, and were slow to get started in person again. Clinics are now taking place however hospitals have tightened many of their policies and have been reluctant to take volunteers back in clinics. We are just this year getting to a point where we are finding more clinics open to the idea of restarting this volunteer programme and are currently in consultation with the clinics we worked with before the pandemic. We will be looking for volunteers in the future.

New TAG hoodies, t-shirts and bags - Firstly a big thank you to Will Shearer for the time he has put into getting this set up. Previously we as an organisation purchased and kept stock of various jumpers and t-shirts, however this just isn't possible and can mean a large financial outlay for TAG, for stock to then sit with us unpurchased. Instead we have decided to support a small business who you can order directly from. In the interest of full transparency TAG does not receive any income from any purchases made. This was a decision taken by the board to eliminate any financial risk that comes from TAG purchasing stock upfront that may not be sold. It also means members are able to choose from a much wider range of colours and sizes.




To view or purchase any of the new TAG branded merchandise please click the link below to be taken directly to the supplier.
Find the new TAG merchandise here
(Please note all items are made to order and there is currently a longer than normal wait time due to Christmas ordering.) If you do purchase any of the new merchandise would love to see photos of you wearing it.
The 40th Anniversary celebration was a really wonderful weekend. I don’t think I have ever received so many hugs greeting members I’ve known over the years. It was also lovely to meet those who were there for the first time experiencing the warmth and friendship of TAG. Thank you for my beautiful bouquet of flowers on Saturday night and to Will for your kind words of appreciation. It was quite emotional for me to fully express my thoughts and thanks to everyone, but there were two people present to whom I should have given a personal thank you. Micky Macartney and Lawrence Robinson have been members from the start. They played important roles in the formal setting up of TAG and both have served as chairperson and in trustee roles. They gave their continued support and time to TAG for many years. I also treasure our personal friendship formed through TAG. Thank you Micky and Lawrence. XX
P.S ...and I forgive you for the title you gave me during my 6 years as Chair of TAG.
Diana

TAG relies on donations to continue the good work that we do. Without this, we would not be able to host the events and support that we provide to members every day. If you can help, please check out the details on our Fundraising page using the button below
We are constanstantly looking to improve our connections with the medical community. Arthrogryposis effects 1 in 300,000 people and there is very little research into the condition. We have a whole section on our website dedicated to medical professionals and improving these connections. Check it out
The Arthrogryposis Group
The Arthrogryposis Group (TAG) is the UK Charity for people living with Arthrogryposis Multiplex Congenita (AMC)
The Arthrogryposis Group is a Registered Charity in England & Wales.
Charity Number 1164158
1 Magor Hill Cottages
Magor Downs
Camborne
TR14 0JF
Tel: 0750 8679 351
Email: help@arthrogryposis.co.uk
