Tollgate Hall, Stanway. Saturday 31 March 2012.
Chairman: Chris Jenkinson. About 20 people were present.
We welcomed Peter Carrington, Community Safety Coordinator, and Charlotte Allen, MD regional fundraising officer.
We have a new NHS care advisor for Essex, Carol Wood, who will advise sufferers from neuromuscular conditions on the ways in which they can get appropriate care and equipment.
Accounts for 2011, including accounts for the No 2 account for 2009 and 2010, were circulated.
Jan Jarman and Janet Saunders have retired from the committee. We thanked them for their contributions over many years. Barbara Baker agreed to be nominated. The following officers and committee were elected for the coming year:
In our appeal "make this day count" for February 29, we raised about £40,000. We are hoping to celebrate the anniversary of the founding of the Muscular Dystrophy Campaign by offering talks at schools at the end the first week of July. Two of our sufferers will be torch-bearers for the Olympics. We are looking for volunteers for a sponsored climb of Kilimanjaro next October.
In the coming year we hope to have about £600,000 available to support research. Research we have supported on utrophin has led to the development of a drug SMT C1100 which may help with Duchenne MD, and for which a phase 1 trial should start soon. A new Wellcome Trust Centre for Mitochondrial Research in Newcastle will extend research we have funded into using a type of IVF to prevent transmission of mitochondrial diseases from mother to child.
We think that in 2011 our advocacy work, helping people to get support, has brought them benefits totalling about £250,000 in money terms.
As community safety officer in Colchester and Braintree, I was involved in setting up the SOS bus in Colchester town centre on Friday and Saturday nights, which brought immediate benefits, both in security and in providing prompt medical assistance. There is a proposal to switch street lights off from 12 midnight to 5 a.m.; pilot studies suggest that this reduces crime. Essex Police will be reducing their establishment by 388 officers in the next few years, so we shall have to be more vigilant.
Today I want to talk about conmen, especially those using e-mails and internet. Make sure that your computer passwords are secure; do not use dictionary words; include upper- and lower-case characters and symbols. Maintain anti-virus software. Do not click on links in e-mails unless you are absolutely sure they are safe; remember that even e-mails which appear to be from your friends can come from a hijacked account; use aliases on social networks. If you receive an unexpected appeal for help, check carefully (e.g., with a telephone call) before responding.
Use a shredder for your waste paper, especially bank and utility statements, and indeed anything with your name and address. Beware of telephone calls claiming that you have a problem with your computer or bank account; insist on calling them back. Avoid offers of building or other work from anyone using a van which does not display a home address and a landline telephone number.
Do not leave coats and bags visible in cars; thieves will hope that they contain wallets. Burglars are often looking just for car keys; do not leave these near outside doors. Do not leave bluetooth devices switched on unnecessarily, as they advertise themselves.
When out at night, avoid using white leads for headphones, as they are visible from a distance.