South Essex Branch

 

Recent news

 

 

Rayleigh Lions raise £1,150

RayleighLionsCheque
Rowan Harvey being presented with the cheque

Rayleigh Lions CIO president Alex Astley-Cooper handed over a cheque £1,150 to MND South Essex Branch as a donation to provide tickets for those living with MND and their families to see the pantomime at Cliffs Pavilion for Christmas 2023

Rowan Harvey from MND recieved the cheque and thanked Rayleigh Lions for the donation which will provide 52 places at the pantomime for those living with the disease, their carers and family members. The pantomime is combined with their Christmas meal and provides them all with some much needed festive entertainment and fun

 

Maldon Constitution Club raise £3,050

Maldon Constitution Club Cheque
Philippe Udrzal being presented with the cheque

Maldon Constitutional Club (MCC) organised various function including a Fun Quiz Night, with a Hamper to raffle, hand-made teddy bear and tickets were purchased by members to guess the bears name. A donation box was placed on the bar in which members kindly put loose change and even some notes!

 

Barry Chatfield, MCC Chairman, whose sone lives with MND, has an internet sales company and he asked his suppliers if they were willing to make donation, which they generously did.

 

Gary Havard, MCC Vice President, is a member of the masons and he asked hisd lodge if they were willing to make a donation, which they kindly did. A fantatstic grand total of £3,050 was raised for our branch.

 

Provide Virtual Reality Experiences for those living with Motor Neurone Disease

A Project by Hadleigh Castle Rotary to provide Virtual Reality experiences for those living with Motor Neurone Disease

 

 

Virtual AGM March 2021

Over 20 people attended the virtual AGM on 20th March via Zoom and Dr Brian Dickie, Director of MND Research gave a very interesting presentation.

 

Minutes of 2019 AGM (2020 AGM cancelled due to Covid-19)

 

Chair Report 2020

 

Treasurer's AGM Presentation 2021

MNDA 2020 Annual Statement

AGM 2021 Financial Commentary

 

Pat Ahlquist reports on the 31st International Symposium on ALS/MND

Full report here

 

Italian Meal

Our first visit to Spaghetti Junction in Chalkwell was a success. £540 was raised for South Essex branch of MND - everyone had a good time with great food. Photos are available on our Facebook page

 

Summer Lunch

60 people attended our Summer Lunch at Wat Tyler Centre including Dr. Brian Dickie who gave a really interesting presentation about current research into MND to people living with MND, their families, their carers and health care professionals.

 

Holidays in Cornwall

We have had two of our couples holidaying in Cornwall this summer

 

Brian and Sheila Ball went to Falmouth travelling by train and taxi. The stayed in St Michaels hotel and after an initial hiccup when there was a problem with access the staff couldn’t have done more to ensure their comfort. Rooms were well equipped for disabled people and help and assistance available. Food was excellent and they had a lovely sea view from their room. They also got out and about to enjoy some of Falmouth’s attractions.

 

Jerry and Gill Gibson also visited Cornwall. Gill writes:

“I read the article in Thumbprint about Ashley Morgan’s stay in Jersey and thought I would contact you about our recent holiday. My husband has MND. He can walk indoors on flat surfaces with a walking frame but cannot manage any steps and uses a wheelchair outdoors.

 

We visited Cornwall and stayed at the King Arthurs Arms pub and B@B in Tintagel, Cornwall. It has 5 Ground floor wheelchair accessible bedrooms, suitable for the use of disabled guests.

 

Ground floor en-suite rooms are suitable for guests using a wheelchair or crutches. Wet room, shower wheel chair or shower stool available, adjustable bed, adjustable chairs, ramps, grab rails all provided. Other equipment such as hoists can be arranged with a local company and Personal Assistance can be arranged directly with local care agency for duration of your visit.

 

Our room had two TVs - one in the sitting area and one in the sleeping area. And I counted seventeen double electrical sockets at waist high around the room so any electrical equipment can be plugged in exactly where you want it. It is rated M3a under Visit Britain’s National Accessible Scheme.

 

The National Accessible Scheme (NAS) is the only scheme that rates the accessibility of visitor accommodation throughout England. With accommodation businesses having varying levels of accessibility, it can be hard for people with access needs to find appropriate accommodation. The NAS gives accommodation different ratings which allows businesses to promote their true level of accessibility as determined by a robust set of standards and assessed by a qualified independent assessor. The ratings helps disabled travellers find accommodation suitable for their particular needs.

 

We also booked to stay in a couple of Premier Inns to break our journey to Cornwall from Essex. We followed the guidance on their website to ring the specific hotel and confirm that they had accessible accommodation with a wet room available for our booking. Despite this when we arrived at the one in Wells they had allocated us an accessible room with a bath which is no use for my husband and could not move us as the rooms with wet rooms had already been given to other guests. This is the second time this has happened to us when booking with Premier Inn. Perhaps the Association could bring some pressure to bear on Premier Inns to improve their arrangement - my attempts to raise it with them have come to nothing."

 

Walk to D-Feet - May 2018

Walk to D-Feet 2018
Another fabulous turnout for our annual MND walk

 

January 2018

Sue Nash, who has chaired our committee for five years, has had to stand down because her father, who lives in Norwich, needs her support. Sue has been a wonderful leader, dynamic, enthusiastic, caring and great fun to work with. We will miss her. Peter Jamison has agreed to be our Chairman and we wish him the best of luck in the role. You will all have a chance to meet him at our AGM on 10th March. Debbie Darke has taken over from Sharon as our Branch Secretary.

 

On Saturday 13th January Peter and Sandy attended a Burns Night at Belfairs Golf Club to receive a cheque for £4584. We must thank Ian Mudie and Amanda, 2017 Captains of Belfairs Golf Club, for choosing MNDA South Essex as their Charity of the year. We have already received about £2000 and if Morrisons send their promised cheque the total will be about £8000. Well done and a big thank you to Ian, Amanda and all the generous members of BGC.

 

On Tuesday 19th December 2017 forty of us went to the Cliffs Pavilion for a Christmas lunch in the Maritime Room followed by the pantomime Jack and the Beanstalk. It was a brilliant production and everyone had a really good laugh.

 

News Round-up November 2017

National office has recently set up a benefits advice line for people with or affected by MND. They have experts on hand to help with the maze of benefits that can be claimed and help with the complex appeals process. Its a free to call number 0808 801 0621 or go to www.mndassociation.org/benefitsadvice

 

As you know Maura produces our local newsletter. Some are sent out by email and some by post. We are of course happy to send out in both formats but by email keeps our postal costs down. If you would like to receive your copy by email please let Maura know. Her contact details are to be found here.

 

Remember the Ice bucket challenge of 2014 (yes it really was that long ago) Ever wonder what happened to all the money that was raised? In the UK 7.2 million pound was raised. 4.7 million has been invested in research including the creation of a UK stem cell bank. The money invested in research has already yielded results with 2 genetic discoveries last year.

 

555k was invested in care which included the launch of a benefits advice line and the funding of 10 MND specialist practitioners

 

305k has been spent on campaigns and raising awareness including 2 national awareness campaigns and the launch of a mobile friendly version of the national magazine. 120k has been spent on volunteering including the training of association volunteers. The balance of some 1.6 million will be spent in the coming few years. Not bad for tipping a bucket of water over your head eh? Shows the power of facebook

 

Talking of which did you know we have our own facebook page? MNDA South Essex Branch will have all the up to date news and articles. Please “like” us and show your support.

 

Sharon our wonderful secretary has decided to stand down form the committee. Sharon worked tirelessly for many years and was host to our monthly committee meetings. There was always a big pot of tea and coffee ready together with a plate or two of biscuits for us. Poor Sharon even had to buy a bigger dining room table when the committee increased in numbers! We will miss Sharon’s humour, positivity and enthusiasm and thank her for many years service

 

We are lucky that we have been able to recruit some fabulous new volunteers to the committee Rowan, who has taken on the role of Treasurer, Debbie who is a breath of fresh air and an absolute whizz at pub crawls and getting raffle prizes and Peter who takes on every job and task going and gets things done pronto. Watch this space for more info on the committee members

 

If anyone would like to join us, we are a friendly bunch who do what we can with what we have. We are always looking for more volunteers, either on the committee itself or for fundraising events, raffle ticket selling, bucket shaking, you name it, we have a space for you! If you are interested, pleas contact Maura in the first instance. Her details can be found on the contacts page of our site

 

If you have any spare “things” that we could use as a raffle prize, we would be more than happy to take these off you! We are always looking around for prizes and are always grateful to our lovely supporters who dig deep and provide us with some simply amazing items

 

The 17th October saw our annual charity Indian meal. This year we went to the Tandoori Parlour in Thundersley. Its a much bigger venue which was just as well as we broke all records! We had over 125 people attend and we raised £1370 on the night. We will be using the Tandoori parlour in the future for our Indian meals. The restaurant was large, had excellent disabled facilities the food was plentiful and the staff were friendly. What more could you ask! Sadly we were all so busy stuffing our faces that we forgot to take any photos. Whoops!!

 

Saturday 30th September saw one of our most spectacular and fun events ever. Rowan and Debbie, two of our newer committee members decided to organise a sponsored cocktail crawl! The idea was to buy a wristband and t shirt for £15.00 and that gave you discounted cocktails at the pubs that were taking part.

Rowan and Debbie

No one rally knew how well this would be supported or how many pubs would get involved. They didn’t take into account Debbie and Rowans social circle and persuasive ways! It turned into a night to remember! All the pubs in Great Wakering took part and took us into their hearts. The Anchor, the Castle the Exhibition and the White Hart turned Wakering Blue white and orange for MND. Every pub put on entertainment by way of bands, duos, and karaoke. There was raffles, auctions, competitions, killer pool, killer darts, jump the pump competitions, spot prizes and all sorts. That night Great Wakering was a sea of blue t shirts with people going from pub to pub and enjoying the fantastic party atmosphere. It was like New Years Eve and there was standing room only in all the pubs. It was a very special night and it was humbling to see the village pull together for us. The effort and work put in by Debbie and Rowan was extraordinary and everyone had the best of times. There were more than a few sore heads the next day. A simply staggering £4601.51 was raised that night. Huge thanks to Debbie and Rowan and also the landlords and ladies of the pubs who went to such an effort to make it a tiptop night

 

Sunday 17th September saw gentle thwack of willow on ball when the Golden Lion Pub in Rochford took on Old Southendians and Southchurch in a charity cricket match. It rained, then the sun shone, it rained and then the sun shone, well you get the idea! The barbeque was very well attended and thanks to the lovely gentlemen who manned this in rain and shine. The queue for their burgers was round the ground twice. Again the raffle was brilliant – mainly alcohol themed! It was so nice to see so many local businesses donating to the raffle, there was meals for two, drinks vouchers, food vouchers, days out and of course, lots of alcohol! Big thanks to the landlord of the Golden Lion who donated a barrel of Maldon Gold for the occasion, a lovely beer that went exceptionally well with the burgers. I haven’t a clue what the final score was, but it was such a lovely day it didn’t really matter. A lovely good humoured afternoon spent in the (mainly) sunshine and over £1100 was raised. Again thanks to everyone involved in such a fantastic event

 

16th September saw one of our most enthusiastic supporters putting on an evening of music, games, dance and mayhem Amy Banks, who lost her granddad to MND and has been, together with her family, an amazing supporter put together a top night to raise funds for her brother Lewis sponsorship in the London Marathon. Everyone had a fun time and everyone joined in with her quiz, games, dancing and the like. The raffle table looked like the gift counter at Harrods – some truly fantastic and plentiful prizes. Over £1000 was raised that night so well done Amy and Good Luck to Lewis who is running the London Marathon next year. If anyone would like to sponsor Lewis his just giving page is www.justgiving.com/fundraising/lewis-mndmarathon

 

June 9th saw a sporting extravaganza – the Terry Shabi 24 hour snooker and pool marathon. Stuart Bingham and other professionals took to the snooker tables of Rayleigh Lanes snooker club and played solidly for 24 hours. There was a great atmosphere and the lads were cheered on by loads of supporters. Magic was provided by The Great Alprendo and there was live music from the Playbacks which had everyone rocking and jigging. There was a raffle and an auction with some amazing lots including a signed snooker cue and VIP tickets to the Masters tournament. A jaw dropping £8326.13 was raised on the night. Massive thanks to everyone involved in that mammoth event

 

Mandy, the ladies captain of Belfairs Golf Course completed a cycle round London through the night to raise funds for us

 

Belfairs Golf Club, both the ladies and Men’s captains have chosen us as their charity of the year and have been raising funds throughout the year for us. As ever we are eternally grateful for such support and such enthusiasm!

 

Leigh horticultural society kindly presented us with a cheque for over £500.00 when we featured as their charity of the year this year. It was a glorious hot day and Sue the chairman was presented with a giant sized cheque in the garden of the Leigh Baptist church at the end of their summer show.

 

Walk to D-Feet 2017

What an amazing day! The sun shone, there was a gentle breeze and we smashed our record again. 385 walkers. Wow! Thank you so much to everybody who took part.

 

 

 

Walk to D-Feet 2016

Wow what a day we had! Thanks to everyone who came. We had 368 walkers: a new record. The sun shone and it was a perfect day. Thanks again for everyone's amazing efforts. Sponsorship money raised is now well over £30,000 and will be further boosted by Gift Aid.

 

 

Walk to D'Feet 2015

A big thank you to all the 187 who walked this year. Stuart Bingham, the new World Snooker Champion carried his trophy for the whole 10 miles. The bucket collection, boosted by people paying to have a photograph of themselves holding the trophy, raised a magnificent £902.