Category Archives: Fun Event

Coastal Walk to D’Feet MND 18th June 2022

After 2 unfortunate years during which we have been unable to hold our Coastal Walk to D’Feet MND, thankfully we are now able to plan for a walk late this year. The walk will take place on 18th June.

There will be three walk options.

  1. A long walk (approx. 24 miles) Whitstable to Broadstairs.
  2. A medium length walk (approx. 11 miles) Minnis Bay to Broadstairs.
  3. A short walk (approx. 6 miles) Margate to Broadstairs.

There is an entrance fee of  £10 which includes a tee shirt (collected on the day), training program, detailed plan of walk, and full insurance.  Only registered walkers can walk and they must wear the tee shirt for insurance purposes.

Each walker is requested  to find sponsorship to support people living with MND in East Kent.  There is no obligation to raise sponsorship but all support is greatly appreciated.

To register for the walk, please visit www.mnda-eastkent.org.uk/walk2022 , complete the form, then follow the link to Just Giving to pay your entry fee of £10.

If you intend to set up your own JustGiving page, we are happy for you to do so. Please select MNDA as your charity and then please mention MNDA East Kent in your story to ensure that funds you raise are used for people living with MND in East Kent.  Once you have set up your JustGiving Page, please link it to our team at www.justgiving.com/team/coastalwalk2022  so we can keep track of the total funds we raise.

If you want to make a donation in support but not register please visit https://www.justgiving.com/fundraising/mnda-east-kent22

Should you experience any difficulties please email webmaster@mnda-eastkent.org.uk

The route is shown on the map above.

Training programs for the walks, the Walk Plan, sponsorship forms, posters and flyers can be downloaded below:

24 mile walk training programme download PDF

11 mile walk training programme download PDF

Walking Route and Plan download PDF

Sponsorship Form download

Poster download

If you are able to display a poster, we would be grateful if you could print a copy and display it.

We thank our sponsors, with whose help we are able to raise substantial sums to help people living with MND in East Kent

Super Christmas Lunch

The East Kent MNDA Group were excited way back in August to start discussions with The Yarrow Hotel in Broadstairs for our Christmas Lunch.  This was the first time since the earliest Lockdown that we’d been able to plan such an event.  With everything in place:  Saturday 11 December as the date, menus chosen and 40+ people scheduled to come, we were hit by the latest fears from Omicron the day prior to the event.  It was early days so we decided to go ahead with the planned event but make a number of safety requirements, e.g. people needed to have had a booster jab, taken a Lateral Flow Test on the morning of the day and observe social distancing wherever possible.  The hotel was visited earlier on the Saturday and table positioning and ventilation checked.  Also, any idea of holding a raffle was, sadly, abandoned as it would have created too much movement around the room.  By lunchtime only one pwMND and his carer cancelled which was a huge relief.

Judy Keay receiving her awards from Chairman David

Our new Chairman David Ward, gave a speech at the end of the lunch and long service presentations were made to Chrissie Batts and Judy Keay. Both were for 10 years of service to the MNDA East Kent community and both richly deserved.

Chrissie Receiving her 10 year award from Chairman David

The event was a huge success with people happy to see each other after a long time + the hotel did us proud, as always, with excellent food, service and attentiveness by staff.  In fact, many people didn’t leave until 3-4!!

Our dearest hope is that next year Covid will be less of a worry. 

Judy and David wishing everyone a Merry Christmas

Mission 5000

The coronavirus pandemic has resulted in many community fundraising events and mass sporting challenges being cancelled or postponed. MNDA wanted to create an event to ensure existing fundraisers could still put their training to good use and continue their fundraising, whilst also allowing us to recruit new fundraisers to support the fight against MND at this difficult time.  As a result we have developed a mass virtual challenge; Mission 5000.

Mission 5000 – the message

5,000 people with motor neurone disease. 5,000 miles to complete. A community uniting to cover the distance. How far will you go?

We expect to lose over £2 million this year due to the cancellation of community and sporting events as a result of the COVID-19 pandemic. But our fight against MND cannot be delayed. People affected by the disease need our support now, they need their voices heard today. People facing MND in the future need our vital research to continue. That’s why we’re on a mission, and we need you to join us. 

Together we want to cover 5,000 miles, that’s a mile for every person living with MND in the UK today. Take part and run, walk, swim, cycle or even scoot however far you can. Every penny you raise will bring us closer to achieving our ultimate mission, a world free from MND.

Mission 5000 – more info

Challenge runs from Sunday 13 September to Sunday 18 October. Participants can cover their pledged miles on one day, week or over the whole 5 week period.

Register by visiting www.mndassociation.org/mission5000

Participants who raise over £100 will receive a limited edition Mission 5000 medal

Participants can cover miles using any discipline they choose, alone or as part of a team. This isn’t just a running challenge and we’d love to see whole families taking part together 🙂

Please support us by registering to walk, run, cycle any number of miles. Please create a JustGiving page at https://home.justgiving.com/ then please join our JustGiving team at https://www.justgiving.com/team/Mission5000EastKent

On line Support Meeting

We will be holding an on-line support meeting on Wednesday 15th July at 11am. We will be using Zoom, you can download the app at https://zoom.us/support/download

If you are living with MND or have been affected by MND, you are very welcome to join us.

We very much hope this meeting will be a success and we will consider further meetings if there is demand. We feel it might be possible to have meetings for specific activities, such as music, films, books or indeed anything for which there is demand from members.

If you would like to attend on Wednesday 15th July please send an email to webmaster@mnda-eastkent.org.uk or telephone 01843 579941.

Reculver Fun Run

Sadly the 1st ever 10k Fun run to support MNDA to have been held on Saturday 18th April 2020 has been cancelled due to Corona Virus. This event was organised by students from East Kent College. MNDA East Kent would like to thank the students for all their efforts and very much hope the experience will be beneficial in future years.

There will be two run options.

  1. A 10K run Starting in Minus Bay running to the Reculver Towers then Back again to the original start point.
  2. A 5K run also starting in Minnis Bay but only going to the halfway point to Reculver Towers before returning to the start point.

There is an entrance fee of £10 which includes a t-shirt (collected on the day) and full insurance.  Only registered Runners can run, and they must wear the t-shirt for insurance purposes.

Each Runner is requested to find sponsorship to support people living with MND in East Kent.  There is no obligation to raise sponsorship, but all support is greatly appreciated.

To register for the run, please visit https://mnda-eastkent.org.uk/ReculverTowerRun/, complete the form, then follow the link to Just Giving to pay your entry fee of £10.

If you intend to set up your own JustGiving page, we are happy for you to do so. Please select MNDA as your charity and then please mention MNDA East Kent in your story to ensure that funds you raise are used for people living with MND in East Kent.  Once you have set up your JustGiving Page, please link it to our team at www.justgiving.com/team/mndafunrun  so we can keep track of the total funds we raise.

If you want to make a donation in support but not register please visit https://www.justgiving.com/fundraising/mndafunrun

Should you experience any difficulties please email 2020reculvertowersevent@gmail.com

The route is shown on the poster below.

The sponsorship forms, posters and flyers can be downloaded below:

Sponsorship Form download PDF poster Jpeg Poster

If you can display a poster, we would be grateful if you could print a copy and display it.

We thank our sponsors; with whose help we can raise substantial sums to help people living with MND in East Kent.

Reculver Fun Run Team

The Reculver Fun Run Team is a group of 1st-year students on a Level 4 HND in Computing at Broadstairs College. MNDA East Kent thank the students and very proud to be associated with Broadstairs College, with whom we have long standing relationship.

Carol Concert

On Saturday 14th December some of our members had the privilege of attending a Carol Concert given by the Thanet Festival Choir at Holy Trinity Church in Broadstairs.

It was a most memorable concert, beautifully sung and wonderfully conducted.

Thanet Festival Choir – conducted by Clifford Lister.

The concerts raised £820.00 for MNDA and we are extremely grateful to all the members of the choir, Clifford Lister – the Conductor, Jim Clements – the Soloist and to the organisers. Many, many thanks to you all.

During the concert the most moving speech was made about the loss of a friend to MND. The speech is printed in full below, please read it, we found it very moving.

Elizabeth

In June 2017 my clever, articulate, creative and very active friend Elizabeth, whom I’d known since we were both 18, was diagnosed with Motor Neurone Disease.

MND occurs when special nerve cells in the brain and spinal column  stop sending signals to the muscles,  which gradually waste away, leading to problems with walking, eating, drinking, speaking and breathing. The causes are not fully understood, there is very little that can be done to treat the disease, and most people with MND die within two years of diagnosis.

The speed with which Liz deteriorated after that June diagnosis was horrific.  By August she was unable to walk unaided. By late October she was virtually wheelchair-bound, and needed help with washing, dressing and going to the toilet. By the end of the year she was using a ventilator to help her breathe. By April 2018 she was starting to have difficulties swallowing and speaking, and had a PEG fitted – that’s an endoscopic medical procedure in which a tube is passed into a patient’s stomach through the abdominal wall to provide a means of feeding when oral intake is not possible. It was, however, her breathing which came to dominate Liz’s daily life as the illness progressed. She had to wear a face mask day and night, struggling for breath, constantly trying to adjust the mask with only a very limited ability to move her fingers and hands. She became terrified that she would choke to death. Her personality changed and she began to suffer from cognitive impairment, depression and panic attacks, sometimes turning against her partner, Keith, and her other carers and friends.

Liz’s life became a constant round of appointments and visits – medical, social care, physio, occupational therapy, counselling, psychiatry – whilst at the same time she had to cope not only with her illness but with the disruption caused by the necessary alterations to her beloved home, including the installation of a wheelchair accessible wet-room and a lift,  and – later, when she became completely immobile  – hoists in her bedroom and living room.  Dealing with the authorities involved was incredibly frustrating. Nothing seemed to happen on time, the various departments and organisations did not liaise with each other, and often the help that she and Keith needed was simply not forthcoming.  Life was a struggle on all fronts. She frequently described it as ‘hell’.

The help and support provided by the Motor Neurone Disease Association was one of the few shining beacons of light in this otherwise impenetrable darkness. The MNDA’s representative in her area attends monthly meetings with the local authority Support Services, and was able to offer advice and help navigate a way through the seemingly endless red tape and incompetence. The MNDA advised on benefit entitlement and provided information about care and mobility options, including the sourcing and financing of a wheelchair-adapted motor vehicle. Funding for specialist posts in hospitals like Kings is provided so that dedicated MND clinics can take place. The MNDA also helps to fund specialist equipment, such as custom-built electric wheelchairs and technical gadgets to help with speech and communication, and sometimes these are available for loan.

Indeed, when Liz and Keith decided to get married, in early December 2017, the MNDA was able to lend her an electric wheelchair in which to ‘go up the aisle’ as, perhaps inevitably, the customised one which had been ordered for her several months earlier had still not arrived. There are also local groups which offer social events and general support– such as the East Kent Group, represented here this afternoon – and online forums for sharing advice and tips about coping with many symptoms and side effects of MND.

MNDA assistance also proved invaluable when, in July 2018, Liz’s care package was suddenly withdrawn on the inexplicable grounds that ‘she did not satisfy the eligibility criteria’. This happened at a time when she and Keith had very few reserves of energy left with which to challenge it. Yvonne, the MNDA rep, was instrumental in fighting for the care package to be reinstated and helping to formulate their appeal, and even came to their home to be there when the appeal assessors visited. The help and support provided by the MNDA in these appalling circumstances was essential and invaluable. I dread to think what could have happened without it.

The other important aspect of the MNDA’s work is the funding of research into the causes and treatment of MND, and possible cures. This is a cruel, truly horrible disease for which improved therapeutic treatment and a cure are desperately needed. Over the course of a year and a half I looked on helplessly as a lively, highly intelligent, active person declined into someone who was hardly recognisable as her former self, desperately trapped in a body which would no longer function.  At the end of November 2017 Liz wrote “This disease is terrible.  I cannot think of anything worse. It savagely and relentlessly destroys one bodily function after another. It gradually takes away the ability to participate in activities one has previously enjoyed. It takes away one’s personal dignity and ability to manage, and controls one’s life. It engenders fear of the future and of being able to cope.” In the end she struggled on for just over another year until January 2019, when she died quietly and suddenly, and thankfully not from the choking fit that she had so greatly feared.

The Motor Neurone Disease Association therefore plays a vital role in helping and supporting people who are afflicted with the disease, and their carers, and in funding research into treatments. Longstanding members and supporters of this Choir may recall that Eileen Vesey, the wife of our founder, died after a long struggle with Motor Neurone Disease. That was in 1987. There has been some progress since then, but not enough. There is still very little that can be done to alleviate the symptoms and a cure is a long way off.  The MNDA is a charity and its important work is financed by legacies, donations and the efforts of fundraisers. It receives no money from the government or the NHS. Please help them to help people like Liz – and Eileen – and to move closer towards finding a cure by donating generously this afternoon. Thank you so very much.

Hazel Halse

4th Coastal Walk to D’Feet MND

Unfortunately our 4th Coastal Walk to D’Feet MND has been postponed until Saturday 3rd October 2020. We hope the Corona Virus Pandemic will then be over. We will be redesigning our posters as soon as we know we are able to hold the walk.

There will be three walk options.

  1. A long walk (approx. 24 miles) Whitstable to Broadstairs.
  2. A medium length walk (approx. 13 miles) Minnis Bay to Broadstairs.
  3. A short walk (approx. 6 miles) Margate to Broadstairs.

There is an entrance fee of  £10 which includes a tee shirt (collected on the day), training program, detailed plan of walk, and full insurance.  Only registered walkers can walk and they must wear the tee shirt for insurance purposes.

Each walker is requested  to find sponsorship to support people living with MND in East Kent.  There is no obligation to raise sponsorship but all support is greatly appreciated.

To register for the walk, please visit www.mnda-eastkent.org.uk/walk2020 , complete the form, then follow the link to Just Giving to pay your entry fee of £10.

If you intend to set up your own JustGiving page, we are happy for you to do so. Please select MNDA as your charity and then please mention MNDA East Kent in your story to ensure that funds you raise are used for people living with MND in East Kent.  Once you have set up your JustGiving Page, please link it to our team at www.justgiving.com/team/coastalwalk2020  so we can keep track of the total funds we raise.

If you want to make a donation in support but not register please visit our http://www.justgiving.com/fundraising/coastalwalk2020

Should you experience any difficulties please email webmaster@mnda-eastkent.org.uk

The route is shown on the map above.

Training programs for the walks, the Walk Plan, sponsorship forms, posters and flyers can be downloaded below:

24 mile walk training programme download PDF

11 mile walk training programme download PDF

Walking Route and Plan download PDF

Sponsorship Form download

Poster download

If you are able to display a poster, we would be grateful if you could print a copy and display it.

We thank our sponsors, with whose help we are able to raise substantial sums to help people living with MND in East Kent


Quiz – Wrotham Arms

A quiz will be held on Thursday November 21st at The Wrotham Arms, Ramsgate Road, Broadstairs, to raise funds for MNDA East Kent. The Quiz will start at 7.30 prompt

MNDA East Kent is looking to enter 2 tables of 6 for the quiz, please email chair@mnda-eastkent.org.uk to book a place.

Entry is £5 per head, nibbles will be provided and teams may bring any extra food they wish.

There will be two games, winners of which will receive a prize. There will also be a raffle.

We look forward to seeing as many supporters turning out to support the Wrotham Arms who have been a fantastic supporter of MNDA East Kent for many years.

Ruby Walk to D’Feet MND

The Ruby Walk to D’Feet MND took place in Canterbury on Sunday 6th October.

Under lowering skies, we hoped for a period without rain and our prayers were answered and our walk went ahead without a single drop of rain.

Brian and Hilary

This year is the 40th anniversary of the Motor Neurone Disease Association. To mark this event Brian Sackett and his sister Hilary Smith organised the Ruby Walk to D’Feet MND.  Both Brian and Hilary lost partners to MND, so it is a subject very close to their hearts.

Brian and Hilary hoped that 40 walkers would walk for 40 minutes and raise £40 in sponsorship, a target of £1600.

54 Walkers turned out on the day, walking for 40 minutes around the athletics track at Lifestyle Fitness in Canterbury, raising the astonishing sum of £3,113 in sponsorship.

The event started with a group photograph of all the Walkers by the Kentish Gazette, which we hope will be published in their next edition.

Walkers ready to start

Walkers came from all parts of East Kent and some walkers travelled from as far as the Isle of Sheppey.

Huge thanks to Brian and Hilary for organising this excellent event,  especially thanks to all 54 walkers who jointly raised £3,113 in sponsorship to date, a fabulous amount which will be used to support people living with MND in East Kent and to contribute towards researching a cure for this devastating disease. 

We would also like to thank Lifestyle Fitness for allowing us to use their track and to Kentish Gazette and the KM Group for their support and especially to everyone who contributed monies towards this great fund-raising event

If anyone has any sponsorship remaining to be paid, please send your cheque made out to MNDA East Kent to 171 Percy Avenue, Broadstairs, Kent, CT10 3LE or alternately to Just Giving at https://www.justgiving.com/fundraising/rubywalk2019  If you use the Just Giving Link please indicate this is sponsor monies for the Ruby Walk.

Anyone wishing to donate can also use the Just Giving link above.

You can see Brian and Hilary give an interview to Kent Online.  It is very moving and worth a read:  https://www.kentonline.co.uk/canterbury/news/i-thought-it-can-t-strike-our-family-again-how-wrong-was-i-210322/  this link also takes you to the KMTV interview.