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.
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.
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.
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.
Campaigns Contact volunteers Greg Broadhurst (Manchester Branch), Colin Hardy (Northumberland Group), David Setters (East Surrey Branch) and Katy Styles (East Kent Group) were joined by Helen Setters and Mark Styles at the lobby.
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.
Sally Light with Signed T ShirtHerne Bay Clock Tower
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.
Daren with enormous carp
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.
Clive Hudson, Mark? and Katy Styles attended the annual conference of the MND Association held in Derby on Saturday 10th September.? Please see https://mnda-eastkent.org.uk/wordpress/?p=1849 for full details.
Anne Pomeroy
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 https://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.
We?spent Saturday 1st October?seeking more volunteers to join us in our work to support persons living with MND in East Kent.? Our Gazebo was on St George’s Street?opposite between Marks and Spencer and Barclay’s Bank.?
We met many people who had been affected by MND and were able to offer support and advice to some of them.
We were seeking new?volunteers to join us in the fight against MND.? We hope some of the people who took away information will join us in due course.
In the meantime we are looking for:
A person who would be happy to be our secretary.? To help?organise 6 meetings a year and to send out minutes of those meetings.
A person with knowledge?of?WordPress,? to maintain and develop our web site.
Volunteers willing to undertake training to become Association Visitors.
Volunteers willing to help with fund raising events and campaigning activities.
Our association offers induction training and?full training as required to fulfil the volunteering role undertaken.
Chris Wade spoke about How Volunteers and Staff of MND Association change lives his speech can be viewed at http://livestream.com/eventstreamingcompany/mnda?follow the How Volunteers and Staff change lives.
The highlight of the conference is always the research talk. This year we were lucky enough to hear Dame Professor Pamela Shaw, who runs SITRaN, in Sheffield.
SITRAN is an excellent example of a care centre and clinical research lab in one.? Full details can be found here http://www.sitran.org
The great thing about attending the conference is being able to meet old and new friends, to put faces to the names of staff that you have contact with throughout the year and it also gives you a chance to reflect on what has been achieved throughout the past year, in terms of care and support, research and campaigning and raising awareness.
East Kent Group attended breakout sessions on corporate fundraising and campaigning and raising awareness.
New trustees are also announced at the conference. Katy Styles, was one of 13 people who put themselves up for election. It was a strong field of candidates and those that were elected will add their strengths to the board.
Project Respect?is the MND Association’s Equality, Diversity and Inclusion Strategy ? and?everyone?can help shape it.
As part of the Association?s ongoing commitment to increase equality, inclusion and diversity, a series of workshops were held across the country to talk about the issues. Judy Keay, AV and committee member of East Kent Group of the MND Association and Katy Styles, campaigns contact and committee member went on the 3rd September to one of these workshops.
Many issues were discussed about equality of provision, equality of volunteer experience and the need to increase our volunteer base. We mentioned ways of attracting new volunteers and hoped to share practice as well as increasing our offer to new groups with literature about how people could volunteer.
It will be interesting to see how this work progresses over the next five years.
On MND global awareness day 21st June Friends of Herne Bay Clock Tower lit up the Clock Tower in blue and orange. The clock tower was lit up for 3 consecutive nights.?? ?
Seeing a landmark in Kent lit up for MND meant a lot to many. As the light faded the blue and orange lights became stronger and stronger and it was great to have a quiet moment to reflect on what this great awareness raising actually meant to people living with MND, past and present.
We made our way from our hotel to the Hard Interchange in Portsmouth city centre, where we met with Ashley Morgan and Shane Dickson our travelling companions for the day, and Pam Fry.
The journey to Southampton was uneventful but bumpy. Upon arrival we made our to Guildhall Square after stopping briefly for refreshments.
At Guildhall Square we met with Councillors Paul Lewsey , Dave Sanders and Warwick Payne. We spent some time in conversation with them and we felt confident of their support for efforts to get Southampton City Council to adopt Our Charter.
Liberty Pride Cheerleaders with Fun Bus behind
The fun bus arrived and after some discussion we were shown where we might park it and then children were allowed on to enjoy the play area.
We were then entertained by Liberty Pride Cheerleaders who gave a delightful display of cheerleading and then happily distributed leaflets to onlookers around the ?square.
Thanks to all the volunteers ?and MNDA staff who came along, thanks to Liberty Pride Cheerleaders, thanks to the Funbus, thanks to the councillors and finally huge thanks to everyone who generously donated.
?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?
