Category Archives: Campaigns

Campaigns are crucial to getting our message about Motor Neurone Disease to Government, health organisation and the public.

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.

Clare Rozier starts her silence Tonight, at 7pm

On Sunday 15th October at 7pm until Tuesday 17th at 7am I will be doing Silence Speaks in memory of my amazing Dad (David Ironmonger).

David Alan Ironmonger

My dad was such an amazing man, always smiling, loved life and everybody loved him. In 2016 Dad was diagnosed with MND, which was a great shock to himself and the family. Over the year Dad lost control of his legs, arms, couldn’t feed himself, and it got so exhausting for him to talk. He had carers 3 times a day to hoist him out of bed, wash, shave, brush his teeth, etc. 

My Mum, Brother,  Husband and myself  would also help with his care. We would take him out in his electric chair and mobility car so he could enjoy the places he loved to go and see. My dad was so brave and battled through this cruel time and would always be smiling. 

Sadly on July 16th 2017, Dad lost his battle to this cruel disease. Myself, brother and my mum were all by his bedside when he died, and he would still try and smile right to the end. 

I miss my Dad so much and think about him everyday.  

I am doing this as I have a CHOICE too.. My Dad Never had a CHOICE. 

I would love to be able to help someone else with MND by raising money. 

I so wish there was a cure for this wicked and cruel disease.

Please support me by visiting www.JustGiving.com/clare-rozier1 donating what you can afford to help people living with MND. 

Thank you for reading and huge thanks to all donors.

Clare Rozier

To find out more about Silence Speaks please visit https://www.mndassociation.org/get-involved/fundraising/doyourownthing/silence-speaks/

Awareness raising at Dover College

On Monday 9th October I attended morning assembly at Dover College to talk about motor neurone disease and the MNDA.

The college had lost a much loved member of staff to MND and the students have decided to support MNDA through the school year and many events are planned.

The presentation was about MND/Kennedy’s Disease, and how the MNDA supports people and families affected by these diseases.

The presentation focussed on the celebrities the student might know of,  who support MNDA such as Professor Stephen Hawking, Benedict Cumberbatch, Charlotte Hawkins, Eddie Redmayne and Stuart Broad.

Also featured were inspirational people living with MND/Kennedy’s Disease, who do everything they can to raise awareness of MND and to raise funds for MNDA.  People like Mark Styles who was instrumental in getting Kent County Council to be the first council to sign the MNDA Charter, Jason Liversedge who despite being in a wheel chair managed to ascend Snowdon and also to abseil off the Humber Bridge and EyeGazeArtist, Sarah Ezekial who creates wonderful works of art using only her eyes.

Thanks to students and staff at Dover College for supporting MNDA and we look forward to hearing about your future activities.

Clive Hudson

Charity notice board at Dover College

Disability Hustings

Mark Styles interviewed at the hustings.

On Tuesday 30th May, 120 people from various charities attended a disability hustings event organised by the Disability Benefits Consortium. The MND Association is part of the consortium so attended with campaigners and staff from across the country. 

Minister for the Disabled, Penny Mordaunt (Con), Kate Green (Lab) and Baroness Sally Brinton (Lib Dem) were present. 

Mark Styles from East Kent Group was selected to ask a question about scrapping reassessments for people with progressive, degenerative conditions. Other questions were asked about social care and work for the disabled.

Please follow this link to go to inews for an article which features Mark Styles  https://inews.co.uk/essentials/news/disabled-voters-grill-election-candidates-nappy-suitable-substitute-night-time-care/

Currently MND Campaigns is running an e-action to get people to ask their General Elextion candidates for a commitment to scrapping reassessments. You can take part here. It’s easy and takes seconds to do.  

https://www.mndassociation.org/get-involved/campaigning-influencing/scrap-benefit-reassessments/

 

 

 

 

Kennedy?s Disease Day Makes History

On 24th March, the first ever Kennedy?s Disease Day ? specifically for people living with Kennedy?s Disease, their families and carers, together with researchers and healthcare professionals took place in Derby.??

The day was run by UCL, the MND Association and UK Kennedy?s Disease. UCL run the Kennedy?s Disease Clinic and research into the disease at the Institute of Neurology, Queens Square, London.??

Kennedy?s Disease is supported by the MND Association. It is a slowly progressive degenerative disease of the motor neurons and has many symptoms that people with MND would recognise, together with some they wouldn?t. It causes mobility, swallowing and speech problems as well as breathing problems.??

The day was all about explaining the research that is currently going on, the support available from the clinic, the work of the MND Association and specifically MND Campaigns and how the charity Kennedy?s Disease UK are raising money for research into the disease.?

The Kennedy’s Disease research team from UCL

Katy Styles addressed the audience, which?was believed to have the?largest number of people living with Kennedy?s Disease present at one time, anywhere in the world. She spoke about how the Association currently supports people living with Kennedy?s Disease, through the work of branches and groups, through support grants, the work of MND Education, publications available and how MND Campaigns had made a big impact on getting more decision makers to understand what life was like for people living with KD. UK Kennedy?s Disease founder Kate Hopps also spoke about their fundraising work and Eric Mager, spoke about the Facebook Group he had set up to support people with KD and their families ? KDRA.??

Everyone came away from the day determined that this would become an annual event and thinking how they could now get involved with fundraising and campaigning to raise awareness of this disease.??

Thanks?to the MND Association for helping support this day.??

More about Kennedy?s Disease UK can be found here.??

http://kennedysdiseaseuk.com/

@NHS Mark – East Kent Group Member, Mark Styles Curates Social Media Twitter Account For The NHS

During the week of 4th ? 7th April, Mark Styles, East Kent Group member curated the social media twitter account of NHS England ? called @NHS.

The idea of the account is that ordinary patients and NHS staff from across the country, get to tell their NHS stories for a whole week. They are able to post onto the twitter account from 8am to 8 pm each day.

Katy and Mark Styles

Mark, who is living with Kennedy?s Disease, used his week to explain about the disease to the followers of this account ? explaining about the work of the Kennedy?s clinic. Indeed, we followed him, through a typical research day looking at the exercises he does at the clinic and even saw him with the staff who ran the MRI scans he undertook. Other parts of the week Mark tweeted about the importance of his multi-disciplinary teams ? featuring photos of his healthcare professionals throughout the week. He also used the opportunity to explain about the new NICE guidelines for MND and the Association?s MND audit tools. He spoke about his campaigning in parliament and the importance of the MND Charter. Finally, on the last day he returned to London, showing the ins and outs of getting on a train in a wheelchair and reminding us all about the importance of good mental health.??

At the end of the week, the NHS account is passed on to the next person and a set of the best moments of the week are put together by the communications team.

Mark?s week can be seen here.??

https://www.england.nhs.uk/atnhs/curator-archive/mark-styles/

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Benefits advice service

Benefits Advice?

Following our successful pilot work we have now established a benefits advice service for people with and affected by MND in England and Wales. The service is available by telephone, e-mail and webchat*.

Telephone:??????????????? ??????????? ??0808 801 0620 (free to call)

E-mail and webchat: ??????????? www.mndassociation.org/benefitsadvice

The service is provided in partnership with Citizens Advice Cardiff and Vale and will:

Help users identify the benefits they may be eligible to claim and how best to claim them

  • Deal with complex benefits issues, including appeals against benefits decisions

Welsh speaking advisers are available on request.

*The telephone and e-mail services are available from 24th Apr 2017, the webchat service will go live later in the week.

You can either contact the service on behalf of your patients or simply suggest that they or their families/friends contact it direct.

As part of the development of the service we are looking at how best we can help people who cannot use the phone, e-mail or webchat complete benefits applications at home and how we can make the service available to people who do not speak English or Welsh.

 

Mark Styles is Curator for the NHS Twitter Feed this week.

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

Follow Mark at https://twitter.com/NHS

See marks NHS Curator Profile at https://www.england.nhs.uk/atnhs/curator-archive/mark-styles/

Katy is runner up at SMK Foundation Campaigning Awards

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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Access to ?Personal Independence Payment (PIP) Survey

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.

?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.