News from our Area - last updated November 2011
Recent Meetings & Events Round-UpAt 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. |
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Common Cause of all Forms of MND discoveredAmerican 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. |
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| 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: ![]() ![]() ![]() ![]() ![]() ![]() ![]() |
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| 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. |
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| 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… |
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| 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 |
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| 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.






