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T-shirts

Hello!

I'm Matt, short for Mathilda.  I have AMC and have been a member of TAG for many years.  I have recently started a t-shirt business and have designed a number of t-shirts around different themes including disability.

I decided to do some fundraising for TAG so I will be donating £1 (that's 50% of my profits) of each shirt sold until the end of July. 

They are all on sale on Amazon.co.uk and Amazon.com; you can find them on my website: www.rampedup.org.uk/shop.  I have attached a flyer showing you some designs but there are many more on my website with more designs added regularly.

Ramped Up T-shirts

I post new designs on Ramped Up's on social media pages:

Instagram - https://www.instagram.com/rampedupuk

Facebook Page - https://www.facebook.com/RampedUpUK/

Facebook Group - https://www.facebook.com/groups/RampedUp - we share general health and well-being information for people with a variety of conditions; e.g. arthritis, blood pressure and diabetes.  We look at non-medical ways of managing these including Pilates, Yoga and meditation.  Come join and share your knowledge with others and learn from them too.

If you have any ideas for t-shirt designs, please feel free to message me on Facebook via Ramped Up or on my personal page: https://www.facebook.com/matt.rangel

I look forward to hearing from you all and seeing you in October at the family weekend

Take care

Matt

 


Trustees news

Trustee News

Unfortunately we have lost Michael (our treasurer) as he has moved offices and moved house even further away from anywhere to the furthest reaches of Cumbria!

Obviously, Ana, (our Secretary) has moved with him too. They both felt it is a long way for them to come to our Trustee meetings.  Thanks again to Michael and Ana for their help in the rebuilding of TAG.

Accordingly, Donna Davis has moved from being Vice Chair to being our Secretary. This means we are looking for a couple of Trustees one of whom could become our Treasurer. For this we are not necessary looking for a qualified accountant or accounting technician, although that would be nice! We need someone used to doing and being a treasurer for a comparatively small company or organisation’s accounts.

Please Contact Peter Lacey on peter.lacey@virgin.net or phone 07989582249 if you feel you could help as Treasurer or Trustee.

TAG Trustees >>


We are a charity...

Fundraising

Just to remind you we are a charity and are dependent on donations and fundraising. For instance, we now have three people interested in running the London Marathon to raise funds for us. Is there anyone else out there who wants to join them? Or is there someone who would like to make a similar type of effort in their own town?

We have also had various other activities from which we have received donations e.g. thanks to Andy and Harry Newton for their Lands End to John O’Groats cycle ride who raised over £400 for us. Also see the article about Klasyczna Polonia. See photo below:

Arthrogryposis stand at the KP Car Show


Clinics

2 new clinics - but we've lost one

The big news is that we hade our very first AMC clinic in Cardiff on 5th June 2019 which is very exciting and follows on from our new clinic at Liverpool Alder Hey Hospital last month. This new clinic was very successful and the staff there were very appreciative of our attendance and looking forward to seeing us again.

Unfortunately, due to certain senior members of staff and lack of understanding of our purpose in attending the clinic, we are no longer allowed to attend the Newcastle AMC clinics. Sadly, it is their patients – our members – who will lose out, but they do not care. We have been going there off and on for 10 years with no problems!

We are still looking for volunteers at the TAG clinics that are now being run with us in the following hospitals:

  • Birmingham Childrens Hospital – every month. 
  • Glasgow Childrens Hospital – every four months.
  • Great Ormond Street Hospital – every 3 months.
  • Liverpool Alder Hey – every three months.
  • Oswestry – every 6 months.
  • Also, Cardiff now every six months. 

All that is involved with this attendance is to chat to members – and especially prospective members – about TAG and how we can help, advise, educate and support through Facebook, website, and our helpline. You will be trained by one of us who have already attended an AMC clinic. These clinics last about three to four hours. Some are held in the morning, others in the afternoon.

If you can help at one of these hospitals then please contact me on peter.lacey@virgin.net or phone me on 07989582249 and I can explain what is involved. Which is not a lot really apart from empathy and information!


Upcoming events for TAG members

Summer 2019

As you can see, and as many of you know the Family Weekend is our biggest and most important get together of the year. We do though, have other smaller events around England, Wales, and Scotland. Not Northern Ireland unfortunately as we don’t have enough members there.

These gatherings are to enable us all to meet other members with AMC, and parents with children with AMC to help them chat to other parents, which we all know is very important.

Planetarium at Millennial Point, BirminghamSunday 16th June
The Think Tank at Millennium Point, Birmingham

It is free to members and their immediate family. We will meet at the entrance from 11am. This is a great place with lots of ‘hands on’ things for people to do. There are various galleries including one about the Spitfire aeroplane and a Marine World one. There are collections showing science and industry items. There is a Natural Sciences collection with everything from Botany to Zoology and other ‘ologies’ too!  For younger children we have an interactive gallery and an outdoor play area.  For those interested there is a new Planetarium. Other exhibits include Discovering the past, the present, and the future. Postcode is B4 7AP.

 

Sunday 30th June
The Barbican Conservatory, Silk Street, London EC2Y8DS

We are meeting at the café at midday. This is on a Sunday so you don’t have to pay the congestion charge. The Conservatory is a tropical oasis in the City in a glass covered area. They have exotic fish as well as loads of tropical plants and trees. We will meet from midday onwards at the café. Entrance is free as is blue badge parking on the site too. Whilst there you can visit other parts of the Barbican Centre. It is enclosed so the weather doesn’t matter. 

Please contact me on peter.lacey@virgin.net or 07989582249 to let me know you are coming or if you have any questions.  

 

Saturday 27th July
National Museum, Cathays Park, Cardiff, CF103NP.

We re meeting at the coffee shop situated in the main hall from 11am. Information from Donna at donnadavis1985_tag@aol.com.

 

Saturday 17th August 
Tropical World, Princes Avenue, Roundhay, Leeds LS82ER

We will meet at the entrance from 11am and is free to members and their immediate family.

 

Sunday 15th September
Exotic Zoo, Lakeside Plant Centre, Priorslee, Telford, TF29TT.

More details on meeting place and time in due course, but it will be free. More info from deanbroome1968@icloud.com.

 

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There are a couple of other events being checked out. Keep watching our website, Facebook, or get in touch with us through help@arthrogryposis.co.uk or phone Peter on 07989582249 or Donna through donnadavis1985_tag@aol.com


TAG Map

The TAG Map

TAG Members UK Map 2017We'd like your opinion. The spread of TAG Members is the length and breadth of the UK, and you might not know who is nearby. We'd like to help Members reach out to each other, and thought a good place to start might be a map.

Tell Us What You Think

This map is an example of what we could do. you will see that there is no personal information displayed, only a location.

Here's how it might work:

1.  TAG Members willing to be contacted by other members let TAG know and we keep a list.

2.  Any member who wishes to meet other people from TAG checks out the map to see if someone is nearby and contacts TAG and asks to be put in touch.

We have always said that TAG's greatest strength is in shared experience and getting together to talk.

Although social media such as Facebook makes keeping in touch seem simple these days, many people don't like using it. We want to ensure any Member has a way to talk to other members if they wish to.

As an added bonus - what a great map this is. Look how many of us there are!

Please let us know what you think about displaying a TAG Map, whether you'd be willing to be on a TAG Contact List. Email us using the address help@arthrogryposis.co.uk or head over to Facebook and comment there.

 


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