Quotation taken from NHS Twitter Feed“I have seen at first hand the power of talking about my lived experience of a rare disease.? By providing first hand testimony I am able to provide some of the facts behind the statistics.? Daily life may be becoming slowly more difficult, but this does not stop me trying to create change and making something positive out of my situation.”
Mark Styles – April 2017
Congratulations to Katy Styles Campaigns Contact for East Kent Group of MNDA was recently honoured as runner up in the Health Category at the?Sheila McKechnie Foundation (SMK) Campaigning Awards.? We know how Katy works campaigning for MNDA and feel the award is thoroughly deserved.
In Katy’s words:
It came as a great surprise to have been nominated for a Sheila McKechnie Foundation (SMK) Campaigning Award in the Health Category for my campaigning for the Motor Neurone Disease Association.??
The Sheila McKechnie Foundation was set up in memory of Dame Sheila McKechnie. ?SMK is entirely dedicated to helping campaigners create positive and lasting social change.
On Thursday evening, we met with the other nominees for all sorts of campaigning categories to celebrate individuals who were striving to make the world a better place. It was inspiring to meet other campaigners and learn about their campaigns. Originally, we were meeting at the House of Lords but the meeting was rearranged to another venue. It seemed fitting to be celebrating the great good people do for one another on a difficult week for parliament.??
To find out I was a runner up for the Health category was the icing on the cake. Being with other campaigners who?understand how hard and difficult campaigning can be and being reminded that some campaigns take years was the encouragement we all needed. I even got to meet some of my own personal campaigning heroes.
Campaigning is all about being part of a team. In our MND Campaigns team we have incredible staff and volunteers. Together with members of the MND Association, their friends and family who all help by emailing, or posting campaign messages or speaking to councillors, MPs or healthcare professionals we campaign to make systems fairer for people living with MND and Kennedy?s Disease.? I hope they all see this nomination as recognition for us all.
Katy Styles March 2017
Download the full list SMK Foundation winners and runners up 2017 here
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 Copy of Email from Madeleine Moon MP,
My name is Madeleine Moon, I am an MP and Chair of the All-Party Parliamentary Group (APPG) on MND*. I lost my husband to a form of MND, so I know first-hand the impact the disease has on the individual and their families. MND can have a significant financial impact on families and access to benefits is therefore really important. ?However, we know that some people with MND find it hard to access these benefits. The APPG on MND has therefore launched an inquiry?into access to?Personal Independence Payment (PIP), a disability benefit for people aged under 65. ?We want to gather evidence of the experiences of people with MND so that we can help improve the system. |
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| ?Take The Survey | ||
| The deadline for the survey is Sunday 9 April 2017.
Please spread the word about the survey ? the more people with MND who share their experiences, the more likely we are to improve access for people with MND and their families. Thank you very much. Madeleine Moon MP Chair of the APPG on MND *The APPG on MND is a cross-party group of MPs and Peers with an interest in MND. The MND Association provides the secretariat to the Group. PS If you would like a paper copy of the survey please contact Tina Downs on tina.downs@mndassociation.org. |
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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?
For more information about Kennedy?s Disease please download information sheet 2B from our publications list.
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.
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 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 .
During November we were encouraging people to complete a survey about the financial impact of MND further information https://mnda-eastkent.org.uk/wordpress/?p=1898
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.
Apologies for any errors or omissions please contact webmaster@mnda-eastkent.org.uk
The signed T Shirt from the South Coast Road Trip has gone on display at David Niven House, the headquarters of the Motor Neurone Disease Association.
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.?? 
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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.
On Tuesday 7th?June,?the Association attended a parliamentary reception ? accompanied by campaigns volunteers Heather Smith, and Katy and Mark Styles representing people living with MND and their carers. In all, they spoke directly to about 12 MPs including Justin Tomlinson MP (Minister for Disabled People) and got across some powerful messages about the challenges they and others in their position face. Just a few of the key facts from our carers survey of 2015 that were shared:
38% are unaware of their right to a carer?s assessment, while only a third have actually had one.
Late in the day Carers Week was granted a parliamentary debate, which was great news. All the work in Carers Week and the weeks running up to it, including the success of the All Party Parliamentary Group meeting held on 24 May, came together. This meant that the MPs present were able to use the facts and personal stories they had heard to great effect. MND was strongly represented during the debate and our concerns and recommendations were heard at the highest level.
Katy Styles said,
?I went to Parliament with the MND Association wanting to be valued. Gosh do I feel valued now! A great mention in the carers week debate by one of the MPs I met at the reception, Barbara Keeley MP.?