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.
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.
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.
A 10K run Starting in Minus Bay running to the Reculver Towers then Back again to the original start point.
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
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.
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 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.
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.
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.
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.
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.
Many thanks to the Thanet Festival Choir who have selected Motor Neurone Disease Association as the beneficiary of their Carol Concert on Saturday 14th December at 3pm in Holy Trinity Church, Broadstairs.
This promises to be a delightful afternoon and we hope many of our supporters are able to attend.
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.
A long walk (approx. 24 miles) Whitstable to
A medium length walk (approx. 13 miles) Minnis
Bay to Broadstairs.
A short walk (approx. 6 miles) Margate to
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.
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.
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
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 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
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
A group of young people doing their National Citizenship service selected MNDA East Kent as their charity for a series of events which took place in Thanet from Tuesday 13th until Friday 16th August.
The reason for selection of MNDA was the death of a family member, you can see the video the group made about this here https://t.co/QYjklKXEEt?amp=1
Another member of the group also had been affected by MND, you can see the video the group made about this here
You can donate to the group on Just Giving by visiting https://t.co/ccILEJNMM4?amp=1 This group of young people hoped to raise in excess of £500, they actually achieved the astonishing sum of £1337.00. Huge thanks to every donor.
The events planned were:
Tuesday 13th August Walking Football with a cake sale at Margate Football Club, Hartsdown Road, Margate. 13.00 – 16.00. Admission was free. To play football, the donation was £1 and for 3 penalties the donation was £2. Full details can be found by visiting here https://www.instagram.com/p/B08-OltlmEh/?igshid=1dvkortoex0xq
Wednesday 14th August there was a live stream on Twitter, Instagram and You Tube.
Friday 16th August the group held a NEON PARTY at Newington Green Community Centre, Marie Thomas, Princess Margaret Avenue, Ramsgate, CT12 6HX, from 16.00 – 20.00. Entry was £3.00. There was music and refreshments.
Huge thanks to this wonderful group of young people, who raised £1337.00 in a very short period of time. Thanks to you all and thanks to everyone who supported your efforts and to everyone who donated.