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.
We will be holding our third Coastal Walk to D’Feet MND on Saturday May 18th 2019.There will be three walks, the first from Whitstable to Broadstairs , the second from Birchington Minnis Bay to Broadstairs and the third from Margate to Broadstairs. All will end with refreshments at The Wrotham Arms, Ramsgate Road, 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/walk2019 , 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/teams/coastalwalk2019/join 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 Donations PageShould you experience any difficulties please email email@example.com
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:
We will be holding our second coastal marathon walk on Sunday May 20th 2018.
A 25 mile walk, will take place from Whitstable to Broadstairs via King George V Park, a 13 mile walk, from Minnis Bay to Broadstairs via King George V Park. A shorter walk of 5 miles, is also planned from Botany Bay Hotel, Kingsgate to Broadstairs via King George V Park.
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/teams/coastalwalk2018/join 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 Donations Page
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.
If your family or your friends have ever been affected by motor neurone disease, please help us to help other families living with this terrible disease.
We need people willing to help in many ways, from joining our committee planning for the future, running fund raising events, helping with social media, helping with our web site or helping out at our events.
Whatever your skills we can you them. Please contact Clive Hudson by email firstname.lastname@example.org or if you live outside of East Kent please contact Claire Tuckett by email email@example.com
Thanks you for reading this request and we hope to hear from you soon.
Our Campaigns Contact volunteer, Katy Styles, tells us her story about why she volunteers for the Association?
?The MND Association support people living with MND, but did you know it also supports those with Kennedy?s Disease, their carers and families.?But how much do you know about this rare disease?
Kennedy?s Disease is also known as Spinal Bulbar Muscular Atrophy. It is a rare disease and no one currently knows how many people live with it in the UK, so you may not have come across it as a volunteer or member of the Association. Kennedy?s Disease is a progressive neurodegenerative disorder which means that people with?it live with muscle wasting, mobility and breathing problems, swallowing and speech problems and a range of hormone problems.
My husband Mark was diagnosed with Kennedy?s Disease six years ago, until then?we had no idea that it ran in his family. He has gone from being physically active to depending on crutches and a wheelchair to get around. He uses a breathing machine at night to support his weakened chest muscles. He also?has a modified diet as he has problems choking. In addition, he is monitored regularly for diabetes, a complication of Kennedy?s Disease. Kennedy?s Disease has many aspects people living with MND would recognise.
When we first joined the Association, little was spoken about Kennedy?s Disease. I met volunteers and staff who have never heard of the disease and if they had they were not aware of the problems someone with Kennedy?s would face. ?Mark and I knew then that we needed to volunteer with the Association to change this and through volunteering we could ensure that Kennedy?s Disease would be talked about and better understood.
I never realised when I first volunteered for the Association what difference raising awareness of the disease would make. Now there is a dedicated clinic supporting people with Kennedy?s Disease with a research programme. We?ve mentioned Kennedy?s Disease in Parliament and in March the Association, the clinic and UK Kennedy?s Disease (a charity set up to fund research into Kennedy?s Disease) are holding the first ever Kennedy?s Disease patient?s day. Things have come a long way in the four years we have been involved with the Association.
What can you do as a volunteer to support someone with Kennedy?s Disease?
Support anyone with Kennedy?s as you do with MND
Signpost them to the new clinic at Queens Square and encourage them to sign up to the Patients Register
Show them the MND pamphlets and literature provided by the Association, as these also apply to people with Kennedy?s.?
For more information about Kennedy?s Disease please download information sheet 2B from our publications list.
MNDA East Kent has been selected as Charity of the Year by the Kentish Gazette and we have introduced many events run by Kent Messenger Charity Team?into our schedule.
All KM events can be entered by our supporters and 70% of all monies raised will go to MNDA in East Kent, the remaining 30% will be used by KM Charity Team to provide services fo0r young people throughout Kent, so fund raising will benefit both MNDA and young people in Kent. For more information on KM Charity Team visit http://www.kmcharityteam.co.uk/
Our first KM event will be abseiling off?the tallest building in Maidstone, we would welcome any volunteers to undertake this challenge for us, to raise money for MNDA in East Kent.
Our provisional schedule of events for 2017 is as follows.? There will doubtless be changes and additions, but these are the events known in December 2016 and these form the basis of our plans for 2017.
1st Jan? New Years Day Party ? Wrotham Arms, Broadstairs.?Details to follow
3rd Feb Race Night – Little Silver Hotel, Tenterden at 7pm.
8th Mar Visit to East Kent by Sally Light Chief Executive, MND Association.
19th Mar KM Abseil ? Maidstone
21st Apr KM Big Quiz – Canterbury
23rd Apr KM Big Bike Ride
6th May Spring Lunch ? Yarrow Hotel Broadstairs
13th May Thanet Coastal Walk (provisional, possibly 20th May)
10th June? Football Match ? Kent MNDA?Vs Surrey MNDA
11th Jun KM Colour Run
18th Jun Choral Concert ? Clagett Auditorium Canterbury Cathedral
2016 has been an interesting and successful year for MND Association East Kent Group.
The year started with a party at the Wrotham Arms in Broadstairs, followed in very short order by a Support meeting in Folkestone and a visit to Westminster where 6 people affected by MND addressed some 42 Parliamentarians.
Young Carers Awareness Day was also in January, which was followed by the Burns Night Supper at BinElla in Faversham.
Mark and Katy Styles spoke to the Psychology Society at the University of Kent on Tuesday 23rd February.
During April The Campaigning Toolkit, the brainchild of East Kent’s?Katy Styles was launched, A Masquerade Dinner in Tenterden raised almost ?10,000 and the?South Coast Road?Trip tee shirts went on sale, together with announcements of the events in East Kent.
A brilliant Spring Lunch was held in May and the press release for the South Coast Road Trip was sent to all media outlets.
June was the month of the South Coast Road Trip with 19 events in 17 days as Clive and Lynn Hudson travelled by public buses from Broadstairs to Land’s End, raising over ?10,000 and also creating great awareness of MND in the process.
The Clock Tower in Herne Bay was lit up with MND colours and MND awareness day and The Podplus 5K run was yet again a success was a successful run raising funds for MND in East Kent.
Campaigning were busy at Parliament for a Carer’s Week Reception representing pwMND and their carers.
In August Summer was in the air with great music at the Broadstairs Summer Hop at The Pavilion, which followed on into the evening at the Wrotham Arms.? Daren Edwards was catching enormous fish in France and the signed road trip shirt went on display at David Niven House.
Katy Styles addressed The National Council for Voluntary Organisations (NCVO)? Campaigning Conference on September 3rd, being the only volunteer to address the meeting.? On the same day Judy Keay attended Project Respect, which?is the MND Association?s Equality, Diversity and Inclusion Strategy ? and?all members are encouraged to help shape it.
Anne Pomeroy walked 100KM along the Thames raising ?1650.93 for MND Association East Kent.
The Co-op run from River to Mill Hill was on 30th September.? The run followed the diagnosis of MND given to local lady Linda Clarke.? The run raised over ?1000 for MND. See http://mnda-eastkent.org.uk/wordpress/?p=1876 for more information.
We held a volunteer recruitment day in Canterbury in early October, the event was an interesting experience and we learned much about how to present any future recruitment day. Unfortunately it was a foul day and we were not successful in gaining any new volunteers.
Judy Keay, Chrissie Batts and Mark and Katy Styles attended a Parliamentary Reception on October 18th, representing the East Kent Group.
They all spoke with?Julian Brazier, MP for Canterbury and Whitstable who attended and promised to follow up the points made at the reception, and other MP’s at the reception. ?Mark and Katy also spoke to the Minister, Penny Mordaunt about their concerns .
Our year ended by funding the installation of a hoist for Martin living with MND, making a contribution to our CEO annual appeal and enjoying a wonderful Christmas Lunch at Yarrow Hotel in Broadstairs.