Tom Harling is running the London Landmarks Half Marathon. Tom is hoping to raise £1,000 to be shared between the Motor Neurone Disease Association (MNDA) in East Kent and my friend John Rawlins who is suffering with it. The funds raised will be shared 50/50.
In Tom’s words
“A good friend of mine, John Rawlins was diagnosed with Motor Neurone Disease (MND)and this lead to him having to give up work around a year ago now. The disease is similar to the ‘Stephen Hawking thing’ and there is no cure.
John worked all his life on building sites as a digger driver from Westgate, and been a good friend of mine for the best part of 10 years. I am running the London Landmarks Half Marathon on 25th March 2018 and am looking for sponsorship through JustGiving.com/crowdfunding/tomharlinghalfmarathon to raise money to split 50/50 between the MNDA East Kent charity and John to help pay for adaptions to his home which he now needs to improve mobility and accessibility.
John , and the MNDA are aware that I’m doing this. John is an absolute legend of a man who despite all this has managed to keep his sense of humour and comical outlook on life.
Thanks for taking the time to read this. And thanks in advance for your donations and support.”
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.
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.
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.
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 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.
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.
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.
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.
You can support this wonderful fund raising event by visiting this Just Giving Page?and making a donation.