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.
Our 4th Coastal Walk to D’Feet MND will be held on Saturday 6th June 2020.
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.
For some time now I have been staggered at the amount of time people living with MND need to travel for various services.
This came to head for me, when I heard a member recount how he has had a round trip of 7 hours plus some 2 hours waiting times. This struck a bell with me, as I often complain about how far we need to travel from East Kent to attend MNDA meetings.
Ideally no person living with MND should travel more than 1 hour from their home for any services and wherever possible multiple services should be available on a single visit
MNDA Million Metres was born, I have committed to cycle one million metres during my 75th year to raise funds for MNDA in East Kent. I hope to raise 1 penny for each metre ridden. These funds to be used exclusively to improve services for people living with MND in East Kent. Where long journeys are necessary, ensure thay are as comfortable as possible.
Since this project involves raising awareness and campaigning as well as fund raising, I expect it to take more than a single year to achieve. The concept of MNDA Million Metres will be used until the objective is achieved. In the unlikely event that we raise more funds than necessary for the project then any surplus will be used for research into a cure for 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
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
An excellent conference with a good mix of MNDA staff and
volunteers who had travelled from all parts of the Eastern Region. 2 members of
the East Kent group attended. Although we are in the Southern Region, we
attended this conference as it was much closer than our own regional conference
The conference was moderated by Richard Coleman the Chairman
of our Trustees. After welcoming us to the meeting, Richard introduced our
first speaker Chris James, Director MND Association.
Chris started by joking about the last time he had visited
Docklands, saying how much more pleasant this experience was compared to
swimming in the docks to raise funds.
Chris then spoke about the Association over the years in
this our 40th anniversary year.
The association was founded by a group of volunteers in 1979,
little can that group have imagined what they would achieve over the next 40
In 1980 the first research project was undertaken, and
research activities have grown to some £16 million currently.
1980 saw the first awareness week and in 1990 the first
International Symposium was held in Birmingham with just 35 delegates, in
Glasgow there were over 1300 delegates. Quite an astonishing achievement.
The MND Care Centre was opened in 1993, there are now 22
around the country. Sadly we do ot have
such a facility in Kent. This must change.
The All Party Parliamentary Group (APPG) on MND was formed
in 2002, this parliamentary body is very influential and an important point of
contact between the association and our law makers.
The ice bucket challenge in 2014 was not only a spectacular
fund raiser but the more lasting legacy of the event is the greatly increased
awareness of MND which has helped in fund raising ever since and will help long
into the future.
The NICE guidelines on the treatment of MND were introduced
in 2016. At last a guide to what is good
treatment and service for people living with MND, the ground breaking document
was as a direct result of campaigning over many years by the association.
In 2018 we lost one of our staunchest supporters, Professor
Stephen Hawking. The remarkable man
raised substantial sums for the association during his life and in death the
auction of his wheelchair raised a whopping £290,000 for the association.
Now at the present in 2019 we are celebrating our 40th
anniversary and much has happened since that inaugural meeting in 1979.
Our next speaker was Alex Massey, policy manager MNDA, who
talked about Campaigning for change.
Two major areas were covered in a very short time.
Scrap 6 Months.
Currently the Department of Work and Pensions (DWP) are governed
by a rule that states that fast tracking for benefits can only be allowed where
a person has in the opinion of his clinician less than 6 months to live.
Since DWP assessors have no knowledge of MND, This haS led
to the appalling situation where people living with MND have not been granted
benefits and in some cases have been expected to retrain for other work.
Our Association has determined to get this law changed. To
achieve this there have been many strands of activity.
A petition with 55,000 signatures was handed into 10 Downing
Street requesting the scrapping of the 6-month rule.
Two things have subsequently happened which give great hope
for the future, firstly the DWP have reviewed guidance to assessors which has
made the system more accessible, secondly a review of the benefits system has
been ordered and we hope this will lead to the scrapping of the 6 month rule
for all terminally ill persons.
Mark Gately from North West Kent Branch spoke
about the activities of his branch and the services they provide to local
people living with MND.
Christian a service user talked about the
service a user might expect from MNDA, including Kings MND clinic, Benefits Advice
Service, Quality of life Grants, Continuing Health Care and Personal Health
The final presentation was a research update by Sadie Vile.
Sadie talked about the research team and how projects to
fund were decided upon.
Research information is provided in many ways, through the
web site, information sheets, Thumbprint, MND research blog and newsletters.
We fund world class research and currently are funding 82 projects. The number of research projects have risen
from 1 in 1980, to 8 in 1996 and to 82 in 2019.
Research we fund
For a full portfolio of the research we currently fund