Silence Speaks is the Association’s activity to raise awareness of speech loss in over 80 % of people living with MND. During October people take up the challenge of raising awareness of the issue by running a variety of events, these include sponsored silences, silent discos, silent quizzes and lots more.
Chrissie Batts, East Kent Hospital Trust’s Specialist Nurse undertakes outreach to hospital
staff at all three trust hospitals to raise awareness of the support people living with MND will need with their carers should they attend or stay in hospital.
As part of this programme, Chrissie together with Judy Keay, Association Visitor Coordinator and Katy and Mark Styles went to the Queen Elizabeth the Queen Mother Hospital in Margate on Friday 20th October to explain about motor neurone disease but with the added pressure of doing this silently. These awareness activities are held weekly within all three hospitals and staff from all departments are encouraged to pop in and see the presentations on those days.
Together Chrissie, Judy, Mark and Katy had downloaded type to speech apps on iPhones and iPads, creating key phrases to explain what we were doing and what help people in hospital with MND many need. We used pads and pens, laminated letter sheets and pre-printed leaflets from the Association.
We met staff from all different departments with very different duties who were all very interested to learn about speech loss in MND. Staff said that as we were not speaking it made them not want to speak. Others commented that it was really important to highlight this issue and asked what they could do to support someone with MND.
During the session, Katy Styles awarded Chrissie with an MND Association Extra Mile Award
for her dedication to supporting the people living with MND in East Kent. Extra Mile awards are awarded to staff who have gone above and beyond to support people living with MND, their families and carers. Katy had pre-recorded a short speech to explain to Chrissie why she was receiving the Award. The Chief Nurse, from the East Kent Hospital University and Foundation Trust, Sally Smith attended the presentation and congratulated Chrissie.
The Kent Messenger Charity Group held their annual forum at The Mercure Great Danes Hotel in Maidstone on Friday 13th October. The forum recognised work of charities and schools for their hard work and dedication.
Mark styles attended from The East Kent Group of MNDA, who are the Kentish Gazette Charity of the Year 2017.
MNDA East Kent was awarded A Gold Charity Mark Award, which was received on our behalf by Mark Styles.
Mark also collected a Brain and Brawn Triathlon Award on behalf of Clive Hudson, who for health reasons was unable to be present on the day.
Mnda East Kent would like to thank KM Charity Team and the KM Group for all the support we have received during 2017 as Kentish Gazette Charity of the Year.
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.
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.
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.
It’s not often you come away from the races with winnings of more than ?2,000 – but that’s what happened on Friday!
Wealden Business Group, the networking organisation for small and medium sized businesses, staged a Race Night at the Little Silver Country Hotel, Tenterden on Friday (3 February) in aid of their charity-of-the-year, the East Kent group of the Motor Neurone Disease Association.
More than 60 people attended, and enjoyed an evening of eight filmed races and a fish & chip supper. When ticket and raffle sales and ?1-a-go betting proceeds were added up, the charity benefited to the tune of more than ?2,000.
East Kent MNDA chairman Clive Hudson thanked WBG members and guests for their support, while Wealden Business Group chair Justin Nelson commented: “It was a terrific evening, and a really fun way to raise money for a thoroughly deserving cause.”
The Group, which meets at the Little Silver every Wednesday for breakfast, business networking and presentations, nominates a charity each year. In the past five years, more than ?25,000 has been donated to local good causes.
Picture shows Clive Hudson and Peta Ashby of WBG, who organised the Race Night.
Reprinted from a press release by Wealden Business Group.
Huge thanks to everyone from the Wealden Business Group for organising this wonderful and enjoyable event, raising over ?2000 to support people living with MND, their carers and families?in the East Kent area.
A short while ago MND Association East Kent were able to support a person living with MND, by funding the installation of a hoist to improve quality of life when travelling.? Ela Miller sent us this letter which we publish in full with some photographs of the hoist.
I would like to thank?MND Association East Kent?Group and all those involved in helping us with the hoist fitting. Martin is in his 4th year of living with MND and found being in the back of the van when travelling quite difficult and always having to sit in the back with his wheel chair, when I turned the van it was hard for Martin to adjust himself back into a straight position. It?was very?uncomfortable for him.
We started looking for other options, which to our surprise we found on the Internet a Milford lift second hand, what a great idea. ?Martin is now be able to sit in the front passenger seat of the car, all I have to do is put the sling on him and press the button of the lift and automatically it lifts him in the car.
I would like to thank the?MND Association East Kent Group?for helping us with the cost of fitting the Milford lift.?It was expensive to fit it in the car as it had to be done professionally.
The lift is fantastic and it makes Martin feel human again instead of being put in the back of a van and feeling singled out .
Thank you so much to MND Association East Kent Group for making this possible.
The Broadstairs Hop was held on Sunday 21st of August.? The Hop provided a great afternoon’s entertainment at the Pavilion in Broadstairs.? The day was very hot and most visitors elected to stay on the beach, resulting in a lower turnout than expected.
A Raffle and donations?raised ?570.22 which was shared between Cheerful Sparrows and MNDA East Kent.? Adrian Powell gave a brief speech on behalf of MNDA East Kent and Cheerful Sparrows were represented by various members of their committee.
The beach lovers missed a great afternoon with Music from Phoebe and the Bear, Flashback, Norman’s Daughter and Lodestone.? Huge thanks to the musicians who provided the entertainment without charge.
Grateful thanks to Alan Morgan and the Summer Hop team for a wonderful afternoon of musical entertainment and for the sum of ?285.11 raised for MND Association in East Kent.