News from our Area - last updated November 2011

Recent Meetings & Events Round-Up At our September meeting, Sandy gave a report on the National AGM where she was very inspired by the talk on stem cell research. Fiona attended a workshop on fundraising and plans to generate more support in the Grays and Lakeside areas. In October Sue Nash attended a ball organised by Hairclubbin Hairdressers, Westcliff, in aid of Dr Alex Moon's tribute fund, and South Essex MNDA. It was held at Lords Country Clun in Hullbrudge and Sue and Ingrid Moon both gave a speech about MND. What a great way to raise funds and create awareness. Many thanks to Ingrid, Sue, and all the organisers and attendees.
Common Cause of all Forms of MND discovered American researchers have uncovered what could be a common cause of all forms of MND. The team, led by Professor Teepu Siddique in Chicago, describes in the prestigious journal "Nature", how problems with the "rubbish recycling" system in motor neurones appear to be integral to the degeneration seen in MND. This could provide an important target for future drug development. These results will need to be verified by other research teams. Also, a new gene has been discovered which causes nearly 40% of cases of inherited MND and will lead to a new test for families affected by familial MND. Anyone who has a family history of MND and who would like to know more abour the test, please contact MND Connect on 08457 626262.
Walk to D'Feet 2011 Wow, you did us proud once again! Another successful walk to D’Feet took place on May 15. Again, thanks to all walkers and sponsors and not least of all Sandy for another huge effort. The latest figure is over £13,000. Thanks to all who took part. Here are some pictures of another memorable day:
Farewells We are very sorry to hear that Tracey Maguire our Volunteer Development Co-ordinator will be leaving the Association. Despite her heavy workload and the huge area she covered she found time to attend some of our committee and Branch open meetings and was always prompt to reply to any queries. We wish her well in her new situation. We also say goodbye to committee member Andy Fensome with great regret as he worked so hard for the Branch chasing funds and helping at events and meetings. We miss him very much Collection helpers needed We have arranged a collection for October 1 in Leigh-on-Sea. If you can help on that day please contact Sandy on 01702 712032 or Maura on 01702 478661. We need lots of collectors. Any time you can spare will be greatly appreciated. Our first Chinese Evening was a great success We held our first Chinese Charity meal at Zen City, Hamlet Court Road, Westcliff, on March 8th. This was a huge success with over 100 people attending. The food was excellent and the attentive service and cheerfulness of the staff added to the enjoyment. Thanks to all who came along.
The Grange Club Thanks go to the Grange Sports and Social Club in Southend who put on a dance evening on April 30th with all profits going to our Branch. Music was by the excellent band The Substitutes, and a buffet supper was provided. Many thanks to all those who so generously organised and supported this event.
All-Party Parliamentary Group The APPG hosted a reception on 20 June in Westminster. Representatives from Groups and Branches attended including Sue Nash representing our Branch. Sue found it an interesting and informative day as she recounts below. I was privileged to represent the South Essex Branch of the MND Association at the launch of a report on specialist palliative care for people with MND. It took place on the 20th June at Westminster. An All-Party Parliamentary Group had prepared the report which coincided with the start of MND awareness week. I was quite nervous as I knew I wouldn’t know anyone but the nerves were soon cast aside when I got there and realised most people were in the same boat! We were put into groups according to our geographical location and it was great to talk to other volunteers from other parts of the country while tucking into the splendid high tea that had kindly been provided. Gavin Williamson MP hosted the reception and gave an insightful speech into the need for specialist palliative care. It was obvious he knew his subject and spoke with enthusiasm and passion that was very encouraging. Dr Christine Knox followed with a speech that was interesting, humorous and of course knowledgeable. Ashley, a lady with MND then gave a speech which was, for me, the highlight of the day. What a funny, courageous, sparky lady she is. There weren’t many dry eyes in the house after that! Andrew Lansley the Health Minister listened to everyone with interest and then gave his speech and received the report. He told us that his friend’s wife had had MND and was aware of just how horrible it was. He then took questions and was certainly put through the wringer with questions being fired at him from all sides. He promised to take the report back to his team to consider carefully the recommendations. I truly hope that he does. Afterwards there was time to chat to my new found friends and compare how the different branches operate and fundraise. A nerve-racking but enjoyable day too. Let just hope that the Health Minister comes up with the goods…

Clinical Trial Results Revealed The results of a phase two clinical trial of a drug called CK201 7357 were revealed at the International Symposium in December, showing the drug to be safe. Within six hours of taking the drug, people had increased muscle strength and endurance which was responsive to the dose given. This is positive news but we welcome the results with caution as a much larger clinical trial using multiple doses (a phase three clinical trial) is now needed to determine the true effectiveness of this drug.		Local Association Visitors We are pleased to now have 4 Association Visitors (AV), and another new person is about to begin training. However, South Essex is a large local area and people with MND continue to need support; the more we can share the help, the better. Have you considered being an AV? The new training programme which summarises all course details, dates and location is available from the volunterring team. Call 0845 6044 150 or email volunteering@mndassociation.org
Travel Insurance - Helpful Hint Have you had difficulty getting travel insurance? Some of our people with MND have got insurance from Final Touch Travel Services (in Leicester), Telephone 0116 272 0500.		Can you help us? The branch would welcome a volunteer who could take over the pursuit of Gift Aid. Please contact Ivor 01702 547517

More news below:

Community Transport for Rochford - Telephone 01268 777434

For permanent residents in the district of Rochford who are unable to access conventional transport due to:

having restricted mobility or being temporarily unable to access public transport or living in an area not served by public transport  or where your transport needs are not met by existing timetables. Operates Monday-Thursday 9.15am-2.30pm and Friday 9.15am-12pm

Passengers will be asked to make a contribution of £1.50 for any distance up to 5 miles and for journeys over 5 miles 40p per mile is payable.

Disability Essex  Travel Voucher Scheme. 

Are you a wheelchair user? Phone to see if you are eligible for £25 per month towards your travel  -  01245 253400

Central London Congestion Charge

Disabled drivers holding  a disabled badge  ( blue or orange )  visiting London can claim 12 months 100% discount from the daily eight pounds congestion charge, by paying a one-off up front fee of ten pounds. A form has to be completed and submitted with a copy of the badge and proof of identity such a birth certificate or driving license

For more details call 0845 900 1234 or visit web site www.cclondon.com

DaRT  SCHEME

If you regularly travel in London and make use of DaRT ( Dial-a-ride and Taxicard), which covers five London Boroughs, please be aware that the name has now changed to Transport for All. For more infomation contact Transport for All on 0207 737 2339 or www.disabilitynow.org.uk

Disability Essex Help

Do you require Guidance or Information on any disability issue. Call the ESSEX Disability  Helpline  08444 121771 staffed Monday to Friday 1000hrs to 1600 hrs by disabled people who can give guidance and help on any subject appertaining to disability, or you can contact via your computer details below.

Help the Aged is concerned that many elderly people are loath to leave their homes because of the lack of public toilet facilities. It would like to hear about any examples where a toilet has been closed by a local authority because it did not meet 'disabled access' criteria. Please advise Help the Aged 01621 892794 or email info@disabilityessex.org 

Complementary Therapies

Complementary therapies, including acupuncture, aromatherapy and reflexology have improved the quality of life for many people with MND, but did you know that the Association will fund up to four treatments of a therapy of you choice. If you think you could benefit from this type of treatment please look www.mndassociation.org or contact Sharon Clark on 01702 479219, who can give you more information and help you identify an appropriate practitioner in you area. It is important that you speak to your GP before undertaking any complementary treatment.

In Case of Emergency

Following the disaster in London the East Anglian Ambulance service has launched a national In Case of Emergency (ICE) campaign. The idea seems an excellent one for those people who normally carry a mobile phone. You store the word ICE in the address book and against it the  number of the person you would want to be contacted in case of emergency, enabling the police, ambulance or hospital staff to quickly speak to your next of kin.

PALS ( Patient Advice and Liaison Service )

As a patient, relative or carer sometimes you may need to turn to someone for on the spot help, support and advice. PALS can help guide you through the NHS system for further info contact branch via email.

Essex Coalition of Disabled People ( ECDP )

Essex Coalition of Disabled People is a disability rights organisation run by disabled people for disabled people in Essex. It was established in 1995 when a group of local disabled people, committed to following Independent Living principles and the Social  model of Disability and aware that no such organisation existed in Essex, formed the Coalition. They are a " cross impairment " based organisation and exist to support ALL disabled people, whatever sort of impairment they may have. This includes people with physical or sensory impairments, learning difficulties, mental health service users / survivors etc. Their website for further details and information is   www.ecdp.org.uk

 BRANCH FUNDRAISING

The Branch would like to thank everybody who donated money via. our collecting tins or by any means - it all goes towards helping people with MND and their families.

DONATIONS TO THE BRANCH

J Smith Bros £50.00, Leigh Fruits £16.44, Thames Ambulance, Canvey Island £416.00, Mrs.S.E.Lambert £50.00, Leigh Constitutional Club  £22.43, Drakefield Insurance (Chr Young ) £180.00

 FUNDRAISING 

Collection at Cliffs Pavilion - Blues Brothers  Tribute    £ 735.80                         Curry Night at the Maharaja Restaurant   £ 1100.00

MONEY RAISED SO FAR  WALK d FEET £27,000

TRIBUTE FUNDS

Mrs.Davis for Terry McGregor  £ 44.00

GIFT AID
If you are a taxpayer we are able to reclaim the tax that you have paid on any donations since April 2000. Therefore every £10 that we receive is worth £12.82 ,just as long as your donations are made through GIFT AID.  This also applies to everyone who seeks sponsorship for an event ( Like Walk to D'Feet MND )  If you would like to find out more about GIFT AID please contact Ivor on 01702 547517. as it is most important that the forms are completed correctly.

Paying too much for Gas and electricity?

If you are thinking of changing energy supplier why not have a look at the switchandgive web site at www.switchandgive.com

They provide an independent comparison service that will allow you to compare prices and service levels from all the gas and electricity suppliers in the U.K.

By providing your postcode, current user details, and future requirements they will provide you with the best options on how you could save money, gain improved service, or switch to a more environmentally friendly service.

If you do choose to switch supplier online, and enter through the Association logo, a donation of up to £40 will be made to the MND Association. The donation made is the equivalent of 80% of the commission paid by the energy suppliers to switchandgive for securing new customers and will no bearing on costs to you. 

Empty Printer Cartridges

The Branch could raise money if people donated their empty ink cartridges, and old mobile phones. If you can help please contact the Branch at sessex@mndassociation.org for further details.

Self Assessment Tax Returns

Did you know that it is now possible to donate money to your chosen charity through Self Assessment tax returns. Donations made this way will benefit from tax relief in the same way that donations made through Gift Aid do at present. Your Self Assessment form will have a section where you can nominate a particular charity to receive an amount of any return due to you. Any amounts donated to your chosen charity will then go directly to their bank account.