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.
I believe no person living with MND should travel more than 1 hour from their home for any services.
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 campaign for and achieve travelling of less than one hour. Where is necessary it exceeds one hour, the journey is made 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
is for people with Motor Neurone Disease (MND) to give courage, hope and
positive determination for others to live with this condition. I don’t like to call it a disease it such a
horrible word for people to say Martin had MND for five years.
and I would often start reading articles in the magazine and stop reading them
as it would often be about people who had left us, I don’t want to sound
disrespectful to anyone, but we found that extremely hard reading.
wanted to open the magazine and find positive stories, uplifting articles, tips
and guides on how to manage life with MND.
about people’s adventures, ideas that people might have and hobbies that people
can do despite MND.
would often start reading articles only to shut the magazine so I wanted to
write an article that was uplifting and if only one person gained from it, I
would be happy
the beginning everyone who has MND knows what it is like, so I’m not even going
to go there. I was racking my brain every minute for something to help. It came to me acupuncture may be beneficial, now
this may not work for everyone, but in our experience, it was so helpful.
went to see this doctor in Canterbury, who was extremely professional. You can imagine our lives were upside down and
we could discuss nothing. It seemed we
could only talk about getting calls from hospitals, from nurses, from the
hospice; all this at the most stressful time.
We felt situation was helpless. Our emotions were so high, and
everything seemed to be collapsing in our world.
went to this Chinese doctor, who lead Martin into the back of his practice, and
I waited in the front, not knowing what to expect. When Martin came back after half an hour, he
was smiling which made me smile. Just
the way he was different.
left and when we got to the car, I was asking millions of questions about what the
Doctor had done. Martin told me he had
put these needles around arts of his body, telling him he could not cure MND,
but that he could but all the emotions Martin was feeling in a box and put them
to sleep in the back of his mind.
shut the lid on the box, from that day our lives changed we could talk about
everything freely without having a breakdown. The positivity was astonishing, and we started
living with MND. Our lives were no longer taken over by MND.
continued to see him for a few months until it was no longer necessary for us
to go. We decided that we would live
each day as we would have done without MND and we did just that!
went fishing, it took our minds somewhere else, outside in the fresh air
laughing and having fun. When Martin
could no longer fish, I started to fish and my excitement and laughter
when catching a fish, made Martin laugh.
He said it made no difference who was fishing he found watching me, so
engaged in it, fun for him.
the sort of guy he was to be able to find hobbies and activities that keeps
your mind focused is the best medicine in the world. It takes you out of your thoughts and allows
you to think of other things. It gave us the strength to carry on as normal.
We were not hiding away from MND, this was the therapy which worked for
not saying it was all rosy, there were the hospital visits and the consultant
visits which in the end we stopped attending.
Martin thought them a waste of time, all doom and gloom. Our experience was not positive, but this
article is about hope, courage and determination.
time came when Martin needed a wheelchair, challenging for most but not content
with the wheelchairs available, which would just about go over a stone when
outside. A friend put up a fundraising page and Martin
had the best outdoor wheelchair available and a van with ramps. He would sit in the back and I would drive,
and we went on the beach, up hills in the mud this wheelchair went everywhere. Martin could still do whatever he wanted to do
and go anywhere he wanted.
Martin’s condition progressed, we sold the van got a car with a portable car
hoist and Martin sat in the front still doing what we wanted to do. He would spend hours looking for stuff on the
Internet so we could continue do what we wanted.
time we changed our hobbies to the garden which became our sanctuary. I bought trees and shrubs. All sorts of planning went on and we always
could write pages and pages more. I
wanted to write this article to give you an insight into Martin’s world with MND.
was never a walk in the park. We coped by being together, doing everything
together, having many interests. Keeping
one step ahead motivated by love, caring for one another, smiling, laughing
reading books out loud, listening to music, having a beer, smoking a cigarette,
sitting out in the snow, and standing in the wind because you like the wind in
facing forward even when you are ill you are still you! MND cannot and will not change that.
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.
Can you WALK for 40 minutes and can you raise £40 sponsorship?
If the answer is yes to both please join us in Canterbury on Sunday 6th October. The venue is Lifestyle Fitness, Canterbury Campus, Knight Avenue, Canterbury, CT2 QA and the time is 2pm.
This year is the 40th anniversary of the Motor Neurone Disease Association. To mark this event Brian Sackett and his sister Hilary Smith are organising a Ruby Walk to D’Feet. Both Brian and Hilary lost partners to MND, so it is a subject very close to their hearts.
Registration details are shown below, if you register on the web site, you will be sent an electronic sponsorship form which you can print, if you chose to register with Brian Sackett he will send you a sponsorship form.
Every sponsored walker will receive an MNDA tee shirt and upon completing the 40 minutes, you will receive a souvenir medallion of the day.
The Saltwood Run has been held for many years on Boxing
Day. Large numbers of runners turn out
to run off some of the Christmas dinner.
North Kent MNDA have been a recipient of funds from the run
for many years. We have received a
cheque for £2,500.00 from funds raised at the 2018 run.
Thanks to Ross Sansom and the team organising the Saltwood
Run and to all the runners who efforts over many years have raised substantial
funds to support people living with MND in East Kent.
Many thanks also to the Members of Rotary Club of The
Channel for their continuing support over many years. We received a cheque for £250 for the run in
Huge thanks to everyone involved in the Fun Run: The Runners, Ross Sansom and his team, Rotary Club of The Channel and everyone who donated. People living with MND in East Kent and MNDA East Kent are very grateful for your continuing support.
On Tuesday 2nd April, Katy Styles and the We Care
Campaign team arrived at Westminster to collect the UK Parliament’s Digital
Campaigner of the Year.
2019 marks the second year
of the Your UK Parliament awards. The winning entries were chosen by the
Speaker of the House of Commons, and a judging panel of MPs, Peers and
independent judges. All of the winners attended an awards ceremony hosted by
the Speaker in the Houses of Parliament.
The Rt. Hon John Bercow,
Speaker of the House of Commons, said:
“There is nothing more
inspiring than hearing how these winners used so many innovative ways to get
people more involved and connected with UK Parliament. This year’s awards have
shone a light on this amazing work – and will hopefully encourage others to
join the campaign.”
We Care Campaign is an ongoing campaign to get a better deal
for the UK’s 7 million unpaid carers. It is led by carers, for carers. Carers
are a hard to reach group as they often feel too tired, too isolated and
disempowered to take part in campaigning.
Care undertook 3 digital activities. Katy ran an e-petition calling on
government to publish a Carers’ Strategy. The petition obtained 2,124
signatures. We Care also encouraged unpaid carers to take part in a twitter
#AsktheMinister question session to the Minister for Social Care, Caroline
Dinenage. We then used our own @WeAreCarers account to host Barbara Keeley, the
Shadow Minister, enabling carers to ask more than one politician the same
questions during Carers Week. We Care organised a Valuing Carers digital event
where decision makers, carers and the cared for posted messages of support for
unpaid carers during Carers Rights Day.
Care Campaign’s activities made a massive difference and impact on our target
audience of unpaid carers who took part in our campaign actions. Individual
carers took part in digital actions which helped organise a real grassroots
campaign. We Care worked hard to utilise every contact made, by replying to
every single contact individually. An unpaid carer speaking of one of our
digital takeovers said, “Normally we get a bit of cake and bunting for Carers
Rights Day. This is so much more than that. It’s not been done before.” We
equally made an impact on individual decision makers, within parliament and
beyond and have built a strong network, enabling us to reach more carers in
Katy Styles who led the campaign said,
“We Care want to thank you so much for a special day
in Parliament. Engaging with Parliament at this time in a positive way has
never been so important and we have loved playing a small part in this.”
The local association held its regular support meeting on Saturday 9th February at Thanington Neighbourhood Resource Centre Canterbury.
The meeting was well attended by those living with MND, their carers, association volunteers and friends.
We learnt about the role of Association Visitors, how they can support people with MND and their carers/families.
We also learnt about the role of a trustee of the national MND association. How it was important to support research via funding and to constantly highlight to MPs and the wider media the difficulties and frustration that people with MND have in accessing benefits.
Clive, the local association chairmen gave an update on monies recently raised. He also spoke about how the local association spent its funds.
One of the issues discussed was how to access priority services with the major utility companies, such as being able to have an emergency electrical supply during power cuts so that ventilators will still work.
A variety of homemade cakes were enjoyed by those present.