The Arthrogryposis Group (TAG)
History of TAG
The Arthrogryposis Group (TAG) was founded by Diana Piercy. Diana had a daughter Sarah in 1980 who was born with Arthrogryposis. When Sarah was almost two, Diana was put in touch with another parent whose child had the same condition and the knowledge that she was not alone brought tremendous comfort and relief. Although there had been a suggestion of a group back in 1981 nothing had happened and Diana knew that there must be other parents and adults with AMC feeling that same isolation.
In April 1984 Diana was in contact with just 6 other people in the country and decided to establish the support group. Diana produced a newsletter for members and in 1986 when membership reached 55, she organised the first national conference for families and professionals. For the families this was a first chance to meet others, exchange experiences and learn more about the condition from the medical profession. There was an incredible atmosphere of understanding, warmth and friendship that weekend, which TAG has continued through Contact, Support and Information. It was at this 1986 conference where a Committee was formed and a constitution adopted allowing TAG to become a registered charity in 1987. During its peak in the 1990s TAG held the Annual Conference in a different part of the UK each year to allow as many people as possible to attend. Up to 100 families would attend each year in addition to the many local events held everywhere from Scotland to the South West.
In 1994 the first TAG Camp was held in Wales for 10 young people with AMC. They tried a range of outdoor activities from canoeing to abseiling and saw for the first time who AMC doesn’t have to limit what they can do. Over 20 years later, it is now a central part of TAG’s work.
As we enter our 36th year we all hope the group can be re-energised with the help of previous and exisiting beneficiaries of TAGs work. As Sarah’s generation are now adults and need our support less, we are aware that over 200 babies are still born with AMC each year. Our goal is the same as is it always was: To reach out to as many of them as possible to ensure they and their families know they are not alone, to provide them with support, information and the benefit of others’ experience and generosity.
Board of Trustees
Chris Davis
Chairman
Hi, my name is Chris Davis. I am married to Donna Davis who was born with AMC and we have two children together. After seeing how much TAG have supported Donna and our family over the years I have decided to join my wife as a trustee and dedicate my time to help others with AMC and TAG as a Charity.
Donna Davis
Secretary
Hello, my name is Donna Davis, I live in Wales with my husband Chris and 2 children, Sarah – Louise and Brandon – Lee. I was born with Arthrogryposis, it affects me in my arms, wrists, legs and feet. Most of my joints were fused at birth.
I am a qualified level 2 nursery nurse and have worked voluntarily for Home start and in numerous schools and crèches with children between the ages of birth and 10 years old.
I have a lot of spare time and commitment that I can offer to TAG.
Charmaine Rodwell
Treasurer
I’m Charmaine and am the current treasurer and a trustee for TAG. I’m originally from Ireland and moved to Essex in 1999.
I worked at Essex University after I completed my PhD in philosophy (briefly) before joining the Civil Service to work in various roles in immigration law.
My little girl has neurogenic Arthrogryposis. I found TAG really helped and speaking to and spending time with TAG members at the start of our journey. I hope I can give back to TAG what it did for my family and I.
It’s been wonderful to meet so many of the TAG members and I look forward to the Family Weekend.
Sandra O'Donovan
Trustee
Hi, I’m Sandra O’Donovan and I live in Leeds. My Arthrogryposis effects all of my limbs, so I do everything that I can with my chin and mouth.
I’m originally from Ireland and I moved to the UK in 2001 to study Performing Arts. I have been involved with disability groups and activism for over twenty years now. I am a bit of a geek and I love travelling, gaming, all things horror, and the Arts.
Matthew Edwards
Trustee
My name is Matthew Edwards, I am studying Media and English Literature at Swansea University. I’ve been a member of TAG all my life and became a trustee in 2021 to help represent the views of younger members of the charity, and to ensure TAG continues to improve the support we provide, which has been so valuable to me all my life. Growing up knowing people my own age with Arthrogryposis was a huge help to me, as well as having role models to look up to and I believe this community is a key aspect of the support we provide.
TAG Clinics
The Arthrogryposis Group are very lucky to work alongside various Orthopaedic Consultants throughout the U.K in forming our specialist TAG clinics. Depending on the severity of your child’s disability you may see a Physiotherapist, Occupational Therapist, Neurologist, or dietician at the clinic. as well as your Occupational Consultant.
We currently have these children’s clinics with these consultants at the following Hospitals:
Clare Carpenter at Noah’s Ark Hospital, Cardiff
Andrea Jester and Harry Prem at Birmingham Children’s Hospital
Gill Smith at Great Ormond Street Hospital, London
Nigel kiely at The Robert Jones and Agnes Hunt Orthopaedic Hospital, Oswestry
Phil Henman at The Newcastle Upon Tyne Hospital NHS Foundation Trust
Grainne Bourke at Leeds Teaching Hospitals NHS Trust
Stefan Spinty and Colin Bruce at Alder Hey Children’s Hospital NHS Foundation Trust, Liverpool
Rod Duncan at The Royal Hospital for Children, Glasgow
If you would like to be referred to attend one of the above specialist clinics for Arthrogryposis then please get a referral from either your child’s current consultant or your child’s G.P
We also have an adult clinic with
Nigel Kiely at The Robert Jones and Agnes Hunt Orthopaedic Hospital, Oswestry
Again, if you would like to be referred to see Nigel then please ask your current consultant or G.P. for a referral.