Tenterden 500K Static Cycle Ride – POSTPONED

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Due to circumstances beyond the control of the organisers this event has been postponed and will now take place at another venue on a later date.  As soon as we know the details we will publish the information.

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On Saturday 11th November a team of 5 plan to  ride 500 kilometres in Relays.  The effort will begin at 8am and the team hope to complete 500K by 6 pm.

They are doing this to raise funds for the Motor Neurone Disease Association (MNDA) in memory of Bill Ashby who sadly died of MND.  The funds raised will help support people living with MND in East Kent.

The cycle ride will take place at Tenterden Leisure Centre, Recreation Ground Road, Tenterden, TN30 6RA.

You can donate online at JustGiving.com/Tenterden500K

Silence Speaks at QEQM Hub

Silence Speaks is the Association’s activity to raise awareness of speech loss in over 80 % of people living with MND. During October people take up the challenge of raising awareness of the issue by running a variety of events, these include sponsored silences, silent discos, silent quizzes and lots more.  

Chrissie Batts, East Kent Hospital Trust’s Specialist Nurse undertakes outreach to hospital

Katy Styles Mark Styles Chrissie Batts and Judy Keay

staff at all three trust hospitals to raise awareness of the support people living with MND will need with their carers should they attend or stay in hospital. 

As part of this programme, Chrissie together with Judy Keay, Association Visitor Coordinator and Katy and Mark Styles went to the Queen Elizabeth the Queen Mother Hospital in Margate on Friday 20th October to explain about motor neurone disease but with the added pressure of doing this silently. These awareness activities are held weekly within all three hospitals and staff from all departments are encouraged to pop in and see the presentations on those days.  

Chrissie Batts Mark Styles and Judy Keay

Together Chrissie, Judy, Mark and Katy had downloaded type to speech apps on iPhones and iPads, creating key phrases to explain what we were doing and what help people in hospital with MND many need. We used pads and pens, laminated letter sheets and pre-printed leaflets from the Association.  

We met staff from all different departments with very different duties who were all very interested to learn about speech loss in MND. Staff said that as we were not speaking it made them not want to speak. Others commented that it was really important to highlight this issue and asked what they could do to support someone with MND.

During the session, Katy Styles awarded Chrissie with an MND Association Extra Mile Award

Sally Smith and Chrissie Batts

for her dedication to supporting the people living with MND in East Kent. Extra Mile awards are awarded to staff who have gone above and beyond to support people living with MND, their families and carers. Katy had pre-recorded a short speech to explain to Chrissie why she was receiving the Award. The Chief Nurse, from the East Kent Hospital University and Foundation Trust, Sally Smith attended the presentation and congratulated Chrissie.

 

 

All Party Parliamentary Group on MND Reception

Together with branch and group members of the MND Association from around the country, Clive Hudson chair of the East Kent Group and Judy Keay, Association Visitor Coordinator attended the Parliamentary Reception in London on 17th October, 2017.

Katy Styles Rosie Duffield MP and Judy Keay

Also attending were Katy and Mark Styles, campaigners for East Kent Group. At the Parliamentary Reception, the All Party Parliamentary Group (APPG) on MND launched their report on PIP – Personal Independence Payments. The report highlighted the problems that people living with MND are having with reassessment of their benefits.  

Powerful speeches were given by Chris Evans, the Vice Chair of the APPG on MND, by Rob Owens a person living with motor neurone disease, Patron of the MND Association Charlotte Hawkins who spoke about her father who had died from MND and the need for equipment and benefits to be timely. Finally, the Minister of the Disabled, Penny Mordaunt spoke about her department and what it was doing to change how information on people was gathered and used. 

Many people had emailed their MPs to attend the event, over 50 MPs and Peers attended on the day. Rosie Duffield MP for Canterbury and Whitstable attended the event to meet Katy, Mark and Judy who live in her constituency.  

MPs will be asked to write to the Minister, Penny Mordaunt to highlight the issue of reassessments of benefits for people living with progressive, degenerative diseases.  

Another big part of the day is for people living with MND, their families and carers to meet with other supporters and catch up.

Katy said “It’s so important that people living with MND, their carers and families, together with Association supporters meet with MPs and share their personal stories. Every time someone shares a story this makes a big impact on an MP or Peer. If we keep sharing these

Read more about the event, and take a look at some of the social media highlights of everything that happened. You can also catch up with the speeches from the day and watch our video of volunteers speaking to MPs.

 

 

Support Meeting 14th October Thanington, Canterbury

We had a good attendance at our latest monthly support meeting which was held at Thanington, Canterbury on October 14th.

We heard a presentation from Dawn Cockburn and Julie Murby of the Harmony Therapy Trust.  A charity who provide NHS approved therapies to patients living with life limiting or debilitating diseases, including MND.

Dawn Cockburn addressing the meeting

We heard that Harmony Therapy Trust is run entirely by volunteers.  The charity is based on the Isle of Sheppey however, they have expanded their services to cover the whole of Kent.

The charity can provide up to 6 sessions of therapy to persons who would be expected to benefit from the therapy.  Therapies are only provided following medical referral.

Harmony Therapy Trust can provide a range of therapies including acupressure, aromatherapy, counselling/talking therapies, healing/reiki, holistic massage, hypnotherapy, ibx nail treatment, indian head massage, osteopathy, reflexology and reflexology lymphatic drainage.

We would like to thank Dawn and Julie for an excellent presentation.  You can find out all about the Harmony Therapy Trust at their website http://theharmonytherapytrust.org.uk

Should you feel you might benefit from a therapy provided by Harmony Therapy Trust, please contact a medical professional such as your doctor or MND nurse who will need to complete the application, which can be found here http://theharmonytherapytrust.org.uk/files/5314/9949/9161/2017_REFERRAL_FORM.pdf

Clive with the two awards

During the meeting we were able to exhibit the KM Charity Mark earned by MNDA East Kent for 2017. The Charity Mark was presented to 50 local charities who have made a substantial contribution in Kent.

Clive Hudson was also awarded a Brain and Brawn Triathlon Award for participating in a minimum of 3 KM Charity Team events in 2017, raising money for the MNDA 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.

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/

Tea by The Sea

Our first Tea by The Sea was held at the Botany Bay Hotel, Kingsgate, Thanet on Wednesday 28th September.

We had six people present 3 of whom had not previously attended one of our meetings.

We enjoyed a good chat with tea and scones and all present were agreed the idea of a local meeting held monthly was a good idea,  especially as they felt unable to travel to other meeting held further away in Kent.

Lynn Hudson, Christine Rawlins, John Rawlins, John Sturges, Clive Hudson, Philomena Lawrence.

Tea by The Sea is on the last Wednesday of October (25th) and November (29th) at the Botany Bay Hotel, Kingsgate at 3pm.  At the  November meeting we will review our plans for 2018.

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.