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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.

Spike is no ordinary cat.

Spike

This month he has been raising awareness of MND and Kennedy’s Disease as he is a finalist in the National Cat of the Year. He is in the Better Together category where it is all about how he and his owner, Mark Styles look out for each other.  

http://www.itv.com/news/meridian/update/2017-06-07/why-is-this-loyal-feline-friend-up-for-a-national-award/ 

Spike, a 17 year old ginger and white moggy has been in the local paper -the Kentish Gazette, videoed and photographed by Cats Protection and on the local news programme – Meridian. 

Spike’s category is one which is decided by a public vote, so if you would like to vote for him after 30th June go to the www.facebook.com/catsprotection 

Winners will be announced on 3rd August at the Savoy, London.

 

 

Consultation: Government?s Work, Health and Disability Green Paper?

The Association has been working on the Government?s major discussion paper?outlining their ideas for getting disabled and people with long-term conditions into work. People living with MND and those affected by it have been surveyed for their views on the proposals. 144 people responded to the MND Association?s survey.

Alongside this there have been two engagement events organised by the Department for Work and Pensions (DWP) and the Disability Benefits Consortium (DBC) of which the Association is a member. One was for the policy staff at the Association and Mark and I attended on behalf of people with lived experience. We were able to discuss with civil servants directly and discuss and challenge their thinking.

The Association will be submitting a response by 17th February. This will be on the main Association?s website.

2016 in review.

2016 has been an interesting and successful year for MND Association East Kent Group.

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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.

Campaigning Toolkit

 

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.

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Sally Light with Signed T Shirt
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Herne 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.

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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 http://mnda-eastkent.org.uk/wordpress/?p=1849 for full details.

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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 http://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.

Katy Styles, Mark Styles, Julian Brazier MP, Chrissie Batts & Judy Keay
Katy Styles, Mark Styles, Julian Brazier MP, Chrissie Batts & Judy Keay

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 http://mnda-eastkent.org.uk/wordpress/?p=1898

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Christmas Lunch

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

 

A Fishy Tale

MND Association East Kent member Daren Edwards who lives with MND, is a keen fisherman and regularly visits France seeking to catch large carp.

On his most recent visit he caught the beauty shown below in a lake in the Champagne Region, it is a mirror carp and weighed in at 32 pounds and took over 20 minutes to land.

For those who appreciate the finer points of fishing, it was using a 15lb mainline with 3 Tiger Nuts as bait.? The temperature was 28C, difficult conditions but Darren had a great time.

DarrenwithCarp

Daren would like to thank MND Association for the financial contribution towards his holiday trip.

CO-OP Charity Run 30th September

Several staff members of The?Co-Op are running to raise funds for MND Association on 30th September.? They will be running from the Co-Op in River starting at 9.30 am, to the?Co-Op in Mill Hill, a distance of roughly 10 miles.? They are expected to arrive in Mill Hill around 11.15am.

Well wishers are welcome at either Co-Op to cheer them on.

LindaClarkeSm

You can support this wonderful fund raising event by visiting this Just Giving Page?and making a donation.