MUSCULAR DYSTROPHY GROUP, COLCHESTER

NEWSLETTER NO. 21, April 2008

CHAIRMAN'S CORNER

The AGM is now over and for those not able to attend I give a flavour of it below. As usual it was a lively occasion with a few new faces that we were particularly happy to see and to make their acquaintance.

  • Collecting Boxes down to a disappointing 168.56
  • Donations 173.19
  • Collection at 5 Ways Tiptree 203.85 Collection at 5 Ways Brightlingsea 333.81
  • Collection at Morrisons Clacton 846.51 Collection at Tesco Highwoods 789.53
  • Collection at Waitrose Sudbury 646.03 Collection at Sainsburys Tollgate 517.66
  • Collection at Tesco The Hythe 834.30 Collections Total 4,151.83
  • Maria's Kefir (including 163.89 from Just Giving) 367.15
  • Maria's Cards 61.36
  • Lesley Moore's brilliant Moonlight Colourthon 384.00
  • Mayor's Charities 5,351.06

    Mayor's Charities events included Army Day - Run4Fun (where your Chairman ran), Mayor's Quiz, Beer Festival, Bach Choir Concert, West Bergholt Concert Band, Teddy Bears Concert, A Night at The Opera with Flowers, Mayor's Ball.

    National Conference held in Westminster, London in September. In 2007 Head Office informed that any member can apply to go to the Conference using an entry form which is sent to members. Although there is an entry fee it is not applicable for members. MD will also arrange to pay to assist up to 4 members with transport costs.

    MD are always looking for good pictures and stories especially in relation to fundraising and pictures can be sent to them (regions@muscular-dystrophy.org) giving details of the event names etc. 2 of our members have reported problems to us regarding holiday accommodation, supposedly for disabled people. This highlights the difficulties for disabled people when booking a holiday, despite carefully arranging what should be appropriate facilities. I hope you all read Target MD. The winter 2007 edition has an article about independent living and how MD are trying to ensure that MD sufferers can more easily attend university whilst the Home Working and Home Study Project provides a positive example of how young people living with muscle disease can be helped to move into employment. In fact, the young man portrayed in the article works from home using an Apple Mac laptop with software packages.

    Trials are now taking place on 9 Duchenne MD boys between the ages of 12 and 17 using molecular patches. I now receive monthly e newsletters from MD. If anyone else wishes to have them sent to them please let me have your email details and I will copy to you.

    Janet Saunders has been Welfare Officer for 5 years and with her and Norman's increasing mobility problems she was ready to hand over to anyone who would take on the responsibility. No-one from the floor volunteered but I had previously had an offer from Gina Clementson to take on this work and I was delighted that we have been able to allow Janet to retire in the knowledge that there was someone to take over from her. Gina will be working closely with Janet until she has the necessary knowledge to continue on her own. Martin Bennett gave Janet a posy and a gift from us all for all her hard work and may I also say here `thank you Janet' for all the hard work you have done, not only in your role as Welfare Officer but also with all the help you and Norman have given (and are still giving) to fund raising efforts. Volunteers are not very easy to find in 2008 so your help has been invaluable over the years. A huge thank you also goes to Norman for all his help. I know that you will miss Janet's voice at the end of the phone but thank you to Gina for taking on the responsibility and you will all now hear a new voice on the telephone before committee meetings take place.

    Jill reports (at the AGM) that Martin [Bennett] has spinal muscular atrophy (SMA) type II, affecting motor cells in the spine, leading to weakness and atrophy in the muscles; Type II is an intermediate form. He doesn't let this stop him and has this year been involved in several exciting projects. Early in the year he took part in a wheelchair skills program run by Whizz-Kidz, and they signed him up as an "ambassador". At Easter we went to Butlin's, Bognor Regis, which Martin enjoys because of the range of wheelchair-accessible facilities; while there he met Kirsten O'Brien. In April we were invited to join in a social history project at Colchester Castle, "Beyond the Label"; Martin joined a group of 10 making short films about their daily lives, with advice from a professional photographer, and a sound artist to help with the voice-over. Martin chose a visit to Gt.Ormond St Hospital as the subject of his film, with the journey, his exercises and a trip on the London Eye (which has excellent facilities for wheelchairs). The film is now on YouTube. When Martin was 6 he joined our local Beaver Scout group. Since then he has been to three sleepovers at Thorrington. Last June they had the district fun day and Martin enjoyed the abseil, being lowered in his harness from a 20-ft tower which Les had carried him up. At the end of July there was a sleepover at Colchester Town Hall, though there was very little sleeping; fortunately Martin was able to cram himself and his chair into the lift. Also during the summer Martin was able to get Roy Hudd's autograph at a Butlin's ceremony in Clacton. In September Martin went to ABN AMRO in Bishopsgate as a Whizz-Kidz ambassador; we were pleased to find that arrangements for the train journey went well, and Martin met Will Carling and Cal Crutchlow. At the end of November, Martin got a gilt-edged card inviting him to the House of Lords, again on behalf of Whizz-Kidz. Les and Martin had to be kitted out in suits and ties. We met Ed Balls and Bob Russell, among others. Martin's 2008 calendar is already filling up!

    I have found that many of you have not completed membership forms and, if you are one of them, I have enclosed an application form to complete and return. Often MD sufferers find it difficult to get insurance cover. However, MD has a partnership with Heath Lambert Affinity Partnerships 01603 828218 and they also have details of companies who will provide specialist insurance for MD and other disabled people, please see insurance.

    Self directed support is the new way that social care will be provided in the future. This means that you will receive an annual amount of money from which you will be able to buy in your own services; this could be to buy them from the local authority or from private sources. A number of our members already buy in their own services and you should contact Gina Clementson if you would like to discuss this with her.

    MUSCULAR DYSTROPHY CAMPAIGN COLCHESTER BRANCH COMMITTEE

  • Chair/Treasurer Chris Jenkinson 60 Marlowe Way, Lexden, Colchester CO3 4JP 01206 520986 christopher.jenkinson@ntlworld.com
  • Secretary David Fremlin 25 Ireton Road, Colchester CO3 3AT 01206 767746 fremdh@essex.ac.uk
  • Welfare Gina Clementson
  • Beryl Leeks
  • Maria Fremlin 25 Ireton Road, Colchester CO3 3AT 01206 767746 maria@gmail.com
  • Jan Jarman
  • Pauline Liddamore 74 Fairhaven Ave, West Mersea CO5 8BG 01206 385660 liddamores@btinternet.com
  • Frances Matthews 7 Phoenix Close, Church Rd, West Mersea CO5 8PN 01206 385421 franmatthews@btinternet.com
  • Patricia Stewart 6 Stoneleigh Park, Colchester CO3 9FA 01206 501615 triciastewart@lexdenmail.co.uk

    19.8.08