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Closed 22/01/2024
TAG

#AMCday #TAGstep Arthrogryposis Support Day

As you all know, the 30th of June is AMC awareness day. We would love for you all to join in with us for #AMCday #TAGstep. We think it would be great if everyone can join us in doing as many steps as they can throughout June.
£650
raised of £10,000 target
by 11 supporters
Donations cannot currently be made to this page
Closed on 22/01/2024
RCN 1164158

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Story

The Arthrogryposis Group also known as TAG is a registered charity which is run by volunteers who take time out of their busy lives to provide help, support and advice to those born with Arthrogryposis (curved joints), their families and medical professionals.

Arthrogryposis Multiplex Congenita (AMC) is a term used to describe over 300 conditions that cause multiple curved joints in areas of the body at birth. It varies from person to person with the commonality being stiff joints and muscle weakness. AMC is not a specific diagnosis but rather a clinical finding of permanent shortening of joints also referred to as non-progressive congenital contractures. AMC is non-progressive meaning that the lack of movement, does not get worse as time goes by however, it is recommended that people affected seek advice to potentially prevent further impediments of the joints. Occasionally AMC can also affect the central nervous system of which the survival rate can be low. Arthrogryposis (also known as AMC) is a very rare condition not well known within the medical profession. This we are trying to change by setting up regular children's TAG clinics in hospitals throughout the UK with AMC specialists which makes families lives a lot easier as they only have to attend one appointment and not seperate appointments for each specialist. At these clinics, children and their families attend their appointments and see a mixture of specialist professionals who specialise in Orthopaedics eg surgeons, physiotherapists, occupational therapists, plastic surgeons, neurologist and anyone else if needed. When a baby is born they need specialist intervention with a physiotherapist and surgery to enable joints to be manipulated into possitions appropriate for walking and / or self feeding. The treatments and advice then continues untill the child turns 16. We try and arrange someone from TAG to attend each clinic so we can offer our support and advice to those who need it and encourage new patients to become members allowing us to continue with our help, support and advice outside of the clinic.

Every year we hold small events around the UK where our members can meet up and give and / or receive support and advice from / to other members. These events allows them to meet others like themselves and their families who live local to them.

Our BIG event which we hold once a year is our family weekend. We invite all our registered members to come along and enjoy a great day tailored for them. This takes place over two days. On the Saturday our members get to meet new and old members / friends and their families who live all over the UK where again they give and / or receive support and advice from / to others. We also invite medical professionals such as orthopaedic sugeons, physiotherapists, genetisist etc and non medical speakers eg Motability, carers trust to come along. Medical professionals introduce themselves and explain what their job entails eg a orthopaedic surgeon will explain how surgery can help someone with AMC. They will talk you through using power points what the most common surgey is in babies or children, how they would perform it, what their recovery time is and what happens after the surgery. We may also invite an adult orthopaedic who would do something simular but tailored to their job. To make it even more exciting we try and invite along some workshops. Last year BOCCIA came along and taught our members how to play where they had an amazing time. Activities like this shows our members they can take part in team games and be like everyone else. It encourages them to be themselves, have fun, show others what they are capable of and gives them some self confidence and self esteem.

On the Sunday we hold our AGM (Annual General Meeting) which is a formal meeting held once a year. This acts as a review of the year and where trustees who run the charity deal with issues such as the election of committee/board members and reviewing the annual accounts. This is the main meeting where any complaints or concerns are expressed by either our members or those on board of the trustees and is then hopefully dealt with at that moment if it can be.



About the charity

TAG

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RCN 1164158
At The Arthrogryposis Group we are able to offer local level support to people living with Arthrogryposis Muliplex Congenita (AMC) or one of the 200 related conditions. We provide regular information and updates on care and treatment, and through our events we give excellent opportunities to meet others with arthrogryposis, their families and anyone involved in their care.

Donation summary

Total raised
£650.00
+ £81.25 Gift Aid
Online donations
£650.00
Offline donations
£0.00
Direct donations
£480.00
Donations via fundraisers
£170.00

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