Category Archives: Volunteering

We Care Campaign wins national campaigning award from UK Parliament

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:

Katy Styles ©UK Parliament_Mark Duffy

“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.

We 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.

We Care Team with Mr Speaker Bercow ©UK Parliament_Mark Duffy

We 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 2019.

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.” fff

Support Meeting 9th February 2019

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.

3rd Coastal Walk to D’Feet MND May 18th 2019

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 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

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

 

Coastal Marathon Walk to D’Feet MND – May 20th 2018

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.

To register for the walk, please visit www.mnda-eastkent.org.uk/walk2018 , 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/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

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:

25 mile walk training programme download PDF

13 mile walk training programme download PDF

Walking Route and Plan download PDF

Sponsorship Form download

Poster download

Flyer download

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

 

KM Charity Forum

Mark Styles receiving The Gold Charity Mark from Barbara Martin

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.

Mark Styles collecting an award on behalf of Clive Hudson from Barbara Martin

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.

Help us to help others!

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  chair@mnda-eastkent.org.uk or if you live outside of East Kent please contact Claire Tuckett by email claire.tuckett@mndassociation.org

Thanks you for reading this request and we hope to hear from you soon.

 

 

Abseiling for MND March 19th 13.00

Clive Hudson in front of the building to be abseiled from

A team of 4 comprising Lucy Powell, Chrissie Batts, Clive Hudson and A N Other will abseil off a tall building in Maidstone to raise funds for MNDA in East Kent.

We have one place left on our team if you would like to fill it please email webmaster@mnda-eastkent.org.uk

You can support our event by visiting https://www.justgiving.com/fundraising/Maidstone-Abseil?or you can text MABS85 ?5 to 70070 to?donate ?5 from your phone, or MABS85 ?10 to 70070 to donate ?10.

Thanks for reading this post.? We look forward to your continuing support.

Volunteering: In your words

Reprinted from MND Association Web Site
Campaigns Contact ? Katy Styles of MNDA East Kent

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.

Group Correspondent required for MNDA East Kent

We need someone to act as our group correspondent, to respond to queries and direct emails to the appropriate member of our committee.

If you have the skills to send out agendas, take notes of meetings send out minutes, and a few hours you are willing to spare, we would love to hear from you.

Our meetings take place every other month in Canterbury.? The duties would be sending out agendas by email, attending meetings which last 2 hours and sending out minutes of those meetings by email.

Please email chair@mnda-eastkent.org.uk?or telephone 01843 579941.

You can view our web site at www.mnda-eastkent.org.uk to see what activities we are involved in.

Our main web site can be viewed at www.mndassociation.org

Thank you for reading, we hope to hear from you.

 

 

MND Association East Kent Provisional Diary of Events 2017

kmgraphicsmMNDA 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 abseil1http://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
  • 24th Jun Summer Ball
  • 25th Jun KM Charity Walk
  • 2nd July KM Dragon Boat Race
  • 15th-17th Sep Carp Fishing Competition
  • 9th Dec??Christmas Lunch
  • 26th Dec??Saltwood Run