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The Newsletter of The Arthrogryposis Group 2003

 It's been a busy few weeks on the TAG front and the deadline for the Newsletter has come round yet again. Since January we have cancelled one committee meeting but decided to hold a training weekend for all regional contacts instead - two days for one! This was made possible by a generous grant from Lloyds TSB Foundation of £10,000 to be spent on volunteer training, website development and publications. A quarter has been allocated to each of the former two and half to the last of these. Hence we have boldly gone ahead with new hosts for the website and have paid to have the site professionally developed. The training weekend was welcomed by those who attended and virtually all the regions were either fully or partly represented. It is a job which is mostly done in isolation so the opportunity to have 24 hours over a weekend to talk a lot and learn a little is a well deserved reward.
 
 Enquiries through the website have yet to be analysed but we also hope to have a link with CAFCash for online donations. Snippets from the Newsletter will also be on the site along with Conference and Camp booking forms available to download. Conference booking forms are now available either by postal application - see the forms in the centre pages - or by email and we can even send you a fillable form by email to fill in and return to us! Peter Lacey has sampled it and says it works! We need to know a reasonable idea of numbers of 9-19 year olds by late July to provide staff for the activities!
 
 We are finding fresh issues coming up all the time and please do respond to Sharon if you can help on the question of "to amputate or not". It is a decision from which there is no going back so every little bit of information would be welcome. Sharon looks forward to receiving email responses - it brightens her day. The email address list is growing and even if you don't have a comment on the present questions please Sharon know your email address so she can include you in her requests for information.

The Group receives a number of historic donations by direct credit to one or other of the bank accounts. Please help Peter to keep this up to date and also consider increasing (?) your own donation if it has been a little static recently!

 On the home front Nancy's care package at Uni seems to be sorted and she is receiving additional support from the Independent Living Fund. We had to get her back on the higher rate of DLA to make this application. If you are being re-assessed at 16 and the Benefits Agency thinks you only merit the Middle Rate of DLA then resist. Assessments for students with disability are a possible topic at Conference this year. Her car is expected to be delivered by Ford in the next week or so before it is shipped off for an amazing list of modifications. She intends to do a very concentrated series of driving lessons over the summer, both formal and with us, in the hope that she will be independently mobile by the start of the autumn term!
 
 I hope you enjoy this edition of the Newsletter. Do write or email us with your comments and don't forget to look at the revamped website. We hope to have it being brought up to date all the time so you never know what might be new.

We welcome any photographs for use in our publications.

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