Some of our members have had trouble when going on holiday with even well known organisations. They have asked all the right questions about the accommodation being wheel chair friendly and got the right answers only to find the accommodation quite unsuitable for a disabled person. So remember, it pays to triple check and when the booking is confirmed, telephone and get them to confirm that what has been booked is suitable for a disabled person. In particular one of our number had an extremely difficult time at Pontins, Hemsby.
The next AGM will be on 8th March 2008 at 1.30, earlier in the year than normal but Tollgate Hall are very busy at this time in 2008. I hope all those who usually come will be there and also I hope those who have never been before will turn up and enjoy the day. If you do not know where the hall is you turn from London Road Stanway down Villa Road; Stanway Village Hall is on the right just before the bend and Tollgate Hall is behind it to the right. Whilst there is a formal part to the AGM this is kept as short as possible and the rest of the time is spent networking and enjoying the party food and the company of the other people present.
Most of you will all be aware that we were a participant in the Mayor's charities events from May 2007 to May 2008 and I am delighted to tell you that we have received a total of £5,351.06 from that source. This is a wonderful amount to have received and Tricia and I enjoyed taking part in many of the events. I can't say that I particularly enjoyed the Run4Fun but it was quite good to be able to take the moth balls out of my running shoes and find out that I could still run a little. No, well I suppose that I did quite enjoy it even if the training was a bit of a pain!!
May I wish you all a Very Happy Christmas and a prosperous 2008 but please spare a few thoughts for Dave & Diane Shaw whose home was flooded whilst they were away on holiday and they had to move out for a few weeks whilst their home was dried out.
Some of the money raised during the last year apart from the Mayor's Charities:-
|Collection 5 Ways Tiptree||£203.85|
|Collection Morrisons Clacton||£846.51|
|Collection Waitrose Sudbury||£646.03|
|Collection Tesco The Hythe||£834.30|
|Lesley Moore/Moonlight Colourthon||£384.00|
|Collection 5 Ways Brightlingsea||£333.81|
|Collection Tesco Highwoods||£789.53|
We still get a steady trickle of money from Kefir and from Maria's cards. We probably won't make it because we have little fund raising amounts to come in this year but we are approaching £11,000 for the year (£10,836.30 as I write this Newsletter). We are now in the process of writing to many of the local and not so local stores to try and book collections for 2008. We hope to have a concert again in March 2009 - 2008 was not possible I'm afraid.
Most of you will know that 80% of the funds we raise are sent to Head Office but we can spend the remaining 20% on welfare for those suffering from MD. If you wish us to consider helping you with a particular project please let any committee member (especially Janet Saunders) know. We are limited by our rules, at present, to a maximum of £250 for each project. The funds that we send to Head Office are returned in many ways be it grants for equipment, treatment or consultations at one of the specialist hospitals or in research into finding a treatment or cure for all forms of MD. Although we are limited in the amounts that we can give to our sufferers we are also aware of other organisations that we can tap into to provide necessary funds for equipment etc. So if you need to make that purchase don't be afraid to pick up the telephone and ask if we can help (or even email me).
We do have a few new members in the Group and hopefully we will see many of them at the AGM. 2008 will, I believe, be seen historically as a landmark year with the experimental treatment of some teenager Duchenne boys. Let us all hope that the treatments that are planned are successful and that they lead to treatments not only for all Duchenne sufferers but also for all the other forms of MD. I should say that other treatments may well take several years and even the routine treatments for Duchenne may be a few years away. However, few of us expected the experimental treatments for Duchenne to happen as quickly as they are (similar experiments in America have already started).
May I say thank you to Maria who has produced some lovely Christmas cards for us and thank you to all those who have helped us with our collections and on other occasions too. A particular thank you is due to Janet Saunders who has continued with the Welfare post this year despite her and Norman's difficulties. We really do need to relieve Janet of the Welfare post after the next AGM so I hope someone will come forward to take on this duty; a lack of knowledge would not be a problem as Janet will still be around to provide her experience and whoever takes it on will soon pick up the necessary knowledge from Janet & other members.
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