Due to circumstances beyond the control of the organisers this event has been postponed and will now take place at another venue on a later date. As soon as we know the details we will publish the information.
On Saturday 11th November a team of 5 plan to ride 500 kilometres in Relays. The effort will begin at 8am and the team hope to complete 500K by 6 pm.
They are doing this to raise funds for the Motor Neurone Disease Association (MNDA) in memory of Bill Ashby who sadly died of MND. The funds raised will help support people living with MND in East Kent.
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 Sunday 15th October at 7pm until Tuesday 17th at 7am I will be doing Silence Speaks in memory of my amazing Dad (David Ironmonger).
My dad was such an amazing man, always smiling, loved life and everybody loved him. In 2016 Dad was diagnosed with MND, which was a great shock to himself and the family. Over the year Dad lost control of his legs, arms, couldn’t feed himself, and it got so exhausting for him to talk. He had carers 3 times a day to hoist him out of bed, wash, shave, brush his teeth, etc.
My Mum, Brother, Husband and myself would also help with his care. We would take him out in his electric chair and mobility car so he could enjoy the places he loved to go and see. My dad was so brave and battled through this cruel time and would always be smiling.
Sadly on July 16th 2017, Dad lost his battle to this cruel disease. Myself, brother and my mum were all by his bedside when he died, and he would still try and smile right to the end.
I miss my Dad so much and think about him everyday.
I am doing this as I have a CHOICE too.. My Dad Never had a CHOICE.
I would love to be able to help someone else with MND by raising money.
I so wish there was a cure for this wicked and cruel disease.
Our first Tea by The Sea was held at the Botany Bay Hotel, Kingsgate, Thanet on Wednesday 28th September.
We had six people present 3 of whom had not previously attended one of our meetings.
We enjoyed a good chat with tea and scones and all present were agreed the idea of a local meeting held monthly was a good idea, especially as they felt unable to travel to other meeting held further away in Kent.
Tea by The Sea is on the last Wednesday of October (25th) and November (29th) at the Botany Bay Hotel, Kingsgate at 3pm. At the November meeting we will review our plans for 2018.
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.
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.
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.