On Monday 9th October I attended morning assembly at Dover College to talk about motor neurone disease and the MNDA.
The college had lost a much loved member of staff to MND and the students have decided to support MNDA through the school year and many events are planned.
The presentation was about MND/Kennedy’s Disease, and how the MNDA supports people and families affected by these diseases.
The presentation focussed on the celebrities the student might know of, who support MNDA such as Professor Stephen Hawking, Benedict Cumberbatch, Charlotte Hawkins, Eddie Redmayne and Stuart Broad.
Also featured were inspirational people living with MND/Kennedy’s Disease, who do everything they can to raise awareness of MND and to raise funds for MNDA. People like Mark Styles who was instrumental in getting Kent County Council to be the first council to sign the MNDA Charter, Jason Liversedge who despite being in a wheel chair managed to ascend Snowdon and also to abseil off the Humber Bridge and EyeGazeArtist, Sarah Ezekial who creates wonderful works of art using only her eyes.
Thanks to students and staff at Dover College for supporting MNDA and we look forward to hearing about your future activities.
We were invited on Sunday August 6th to visit Strode Park Foundation for tea and a walk around parts of the house and the grounds.
There were 12 of us attending and we enjoyed a fabulous tea of sandwiches, scones with jam and clotted cream and a selection of cakes.
The sandwiches, scones and cakes were prepared at Strode Park by ??, all were beautifully fresh and delicious. The tea was served by Anthony who thoroughly spoiled us.
We were shown around the grounds, Daren found a lake with a no fishing sign, which indicated to him there would be something worth catching.
The open air auditorium is a fantastic facility with every part accessible by wheelchair, we were invited to look at the website Strodeparkfoundation.co.uk to find out about concerts and booking them if we wished.
We were shown around non residential parts of the house, including the gymnasium and the hydro therapy pool, which is available to people living with disabilities including MND.
Daren looked up to catch this image of our group – most of us missed it!!
Huge thanks to John Cotterill who showed us around and to ?? and Anthony for making the tea so special.
We have been invited to have tea at Strode Park at some future date and we are welcome to attend any public events held at the Foundation.
A coastal walk was held on 20th May to raise funds for MNDA in East Kent.
The walk started in Whitstable at 07.00 with 21 walkers turning up to register for the 25 mile walk. These walkers walked some 12miles along the beautiful East Kent coast in glorious sunshine until they reached Minnis Bay, Birchington.
The walkers were joined at Minnis Bay by another 46 walkers registered to walk 13 miles, all 67 walkers then set out to walk to Ramsgate, along the Kent Coast, through Westgate and Margate to The Botany Bay Hotel.
At The Botany Bay Hotel the walkers were joined by the final group of 16 walkers registered to walk 5 miles to Ramsgate. All 83 walkers now walked though Broadstairs and on into Ramsgate, where the walk ended at the Churchill Tavern, who laid on light refreshments for walkers and supporters.
All walkers who finished were given a medallion for completing the inaugural Coastal Walk To D’Feet MND. Adrian Powell Made a short speech to the walkers thanking them for making the day very enjoyable and for raising funds for MNDA in East Kent.
The walk was conceived by Cath Miller, who formed a committee of Steve Miller, Adrian Powell, Lynne Paine, Dawn Smith, Ayesha Powell and Clive Hudson. The committee planned the whole event and executed the walk with the help of several volunteers who manned registration, acted as marshals, collected cash and put up signage.
Huge thanks to all the walkers and their sponsors, who enable us to raise £9,064.88 including gift aid.
Special thanks to
Dawn Smith for sponsoring the medals.
Ian Pettman – Premier Signs for sponsoring the signage.
Diary Date for 2018 – the Coastal Walk to D’Feet MND will take place on Sunday May 20th.
On Friday evening when we arrived at the hotel, we had the opportunity to meet with some trustees and members of other groups, which was helpful in identifying some new ideas to work towards improving our activities in East Kent.
Saturday started with a short welcome speech by Alun Owen Chair of the Trustees of the Association.
Sally light then spoke of what we had achieved in 2016 and how we can help. She used 2 excellent graphics for this and these are reproduced below. These present the gist of her speech much better than any words.
Chris James spoke about the Association’s in complementing statuary services, collaborative working and the MND Costs Campaign.
Steve Bell spoke about the “What You Should Expect” an excellent small booklet giving brief details of what a pwMND should expect from the NICE Guidelines on MND and the Audit Tool to help assess how various bodies are doing in compliance with the guidalines.
We broke into groups which covered subjects like money for nothing fund raising, care update, the journey from awareness to action and local and regional finance.
We broke for lunch and the opportunity to look around the various stalls, we were particularly impressed by REMAP, a charity which makes custom made equipment to help disabled people live more independent lives. Please visit www.remap.org.uk
The AGM followed, during which our own Katy Styles was elected as a Trustee and Richard Coleman was elected as Chair of the Trustees.
East Kent MNDA Group entered the KM Charity Group Dragon Boat Race for the first time on July 2nd this year.
Our team was made up entirely from one family who had been affected by MND, supported by members of another family affected by MND.
The racing took place in Mote Park Maidstone and we arrived for our first race, registered only to find we had missed the cut off time, so rather than 3 races. we only raced twice.
Though none of our team had ever rowed a dragon boat, we managed to win both our races, however we were not fast enough to be in the final 6 teams, for the race off to be winner of the day.
We thoroughly enjoyed the day and the team is determined to race in 2018 and make a serious attempt to win. Huge thanks to our rowers and everyone who turned up to support. Thanks to KM Charity Group for organising this fabulous event.
On June 30th Wealden Business Group hosted a Murder Mystery Evening at Little Silver Country Hotel in Tenterden. The case was The Curse of the Willoughby Diamond.
The evening started with champagne as we were shown to our tables, we were hosted on a table by local members who were excellent company.
We enjoyed an excellent 3 course meal to die for!! During the meal the actors presenting the murder mystery developed the plot of the murder and murder was indeed committed.
We were then invited to use our sleuthing skills to question the cast to see if we could identify the guilty party. Our table asked some interesting questions, however we did not fine the killer.
The murderer was eventually declared and everyone in the room was a bit surprised but less so after being given the details of the crime.
There were several very good 1920 costumes, the winners Gary and Clair Bodie were chosen by a panel who were judging for the best couple, which was unfortunate for one girl on our table who was dazzling in a 20’s outfit, however her partner was not in period dress, so could not win.
The evening ended with an announcement that Murder Mystery had raised over £3000 for the Moor Neurone Disease Association in East Kent.
Sunday 18th June saw the Canterbury Vocals combined choirs and soloists come together to raise funds and awareness of motor neurone disease. The choirs were the Canterbury Ladies’ Choir, Canterbury Girls’ Choir and The Canterbury Voices.
The event took place at The Clagett Auditorium at Canterbury Cathedral Lodge on the hottest day of the year.
The three choirs performed a variety of pieces from ballads, opera pieces and humorous pieces.
Judy Keay, choir member and East Kent MND Association Group Committee Member, explained about motor neurone disease and the work of the Association to the audience which included the Lord Mayor of Canterbury, Councillor Rosemary Doyle and the Lady Mayoress, Jenny Yonge.
The choirs performed brilliantly despite the soaring temperatures and a very enjoyable time was had by all.
This month he has been raising awareness of MND and Kennedy’s Disease as he is a finalist in the National Cat of the Year. He is in the Better Together category where it is all about how he and his owner, Mark Styles look out for each other.
40 Mile bike ride in Support of John’s Journey, Raising funds for John and Motor Neurone Disease Association. Starting at the Margate Harbour Arm but with no more than 10 miles between beer breaks (other drinks are available). via Reculver, Preston, Sandwich, and back around the coast finishing at the Lighthouse Bar Margate Harbour Arm where a BBQ will be available and live bands. All welcome! Full details and route map will be posted soon. Sponsorship form can be downloaded as a jpeg in photos and printed.
Please share this event with your friends to raise awareness and get as many riders as possible!