The local association held its regular support meeting on Saturday 9th February at Thanington Neighbourhood Resource Centre Canterbury.
The meeting was well attended by those living with MND, their carers, association volunteers and friends.
We learnt about the role of Association Visitors, how they can support people with MND and their carers/families.
We also learnt about the role of a trustee of the national MND association. How it was important to support research via funding and to constantly highlight to MPs and the wider media the difficulties and frustration that people with MND have in accessing benefits.
Clive, the local association chairmen gave an update on monies recently raised. He also spoke about how the local association spent its funds.
One of the issues discussed was how to access priority services with the major utility companies, such as being able to have an emergency electrical supply during power cuts so that ventilators will still work.
A variety of homemade cakes were enjoyed by those present.
We had 53 diners at our annual Christmas Lunch at the Yarrow Hotel, Broadstairs on Saturday 8th December.
We had an excellent meal, beautifully served by the staff of the hotel, who as ever were excellent.
During the course of the lunch Katy Styles MNDA Trustee awarded a 25 year award to Hazel Izzard (Watts) for her service to MNDA in East Kent over the past quarter century. Hazel has retired from our group and we gave her a beautiful bouquet in recognition of the incredible work she has done to support people living with MND in East Kent.
As in previous years we had a superb raffle, with prizes being bought along by many diners and we had lots of fun drawing the raffle and the children present certainly had fun collecting various prizes.
We would like to thank the Yarrow Hotel and their wonderful staff, all raffle donors and everyone who attended for making it such a splendid lunch.
We wish everyone a wonderful Christmas and a good 2019.
The MND Association AGM was extra special for me this year as it makes a full year since I was nominated to be a trustee for the Association. I have now done a full round of Board Meetings, Committee meetings and project task group meetings.
Why go to the AGM?
The AGM is a place to meet up with old and new friends, other volunteers and staff from our MND community, together with exhibitors and speakers.
I find that there is always something new to learn, whether it is from another Branch or Group, or finding out about the research being done, or the equipment on offer. One big hit was the virtual reality headsets which Mark, my husband tried out. One was a general virtual reality demonstrating all of its features including being in a helicopter, in a hot air balloon and giving lots of different views and landscapes. He particularly enjoyed the car racing around the Le Mans circuit.
I attended a workshop around Legacy Fundraising which was one aspect of the Association’s work that I knew little about.
Even if you can’t attend to you can follow the event Live on Facebook and it is always nice hearing the messages read out from those back at home, watching the event unfold. Here’s the link to this year’s AGM and research speech. https://www.mndassociation.org/videos/
The afternoon speaker was Professor Martin Turner who was there to speak about his bio -marker research at Oxford. Something close to my heart. I have been part of that research, sitting in multiple scanners for many hours as a healthy control for Professor Turner’s research. I was very interested to hear how that particular research was going.
On Sunday 1st July, MNDA East Kent entered a team in the KM Charity Group Dragon Boat Race. Our team was made up of members of the Lawrence family from Folkestone. The team were entered into three races, impressively winning two and coming second in the third race.
In our final race, we were pitched head to head with the team from MNDA Mid Kent, who were the fastest team on the day. It was a very close race, we managed to beat Mid Kent but due to their faster times in earlier races they went through to the finals. Congratulations to the team of MNDA Mid Kent!
The East Kent Group met on Saturday for an open meeting for people living with MND, their carers, friends, family and volunteers.
We had 23 attend in all and we had the honour of a visit from Councillor Colin Spooner The Sheriff of Canterbury, who addressed the meeting. Huge thanks to Colin for making the time in his busy schedule to visit with us.
Other contributors were Chairman Clive Hudson who spoke briefly about fund raising plans; Judy Keay who spoke about our Association Visitors; Lynn Hudson who spoke about our monthly Tea by the Sea meetings and finally Katy Styles who updated us on current campaigning activity.
We enjoyed sandwiches and cake prepared by the committee members and lots of warm hearted and friendly conversation.
Some time ago, when I started to look around for some voluntary work I decided to become involved with MNDA. Initially I joined the committee in East Kent and then trained as an Association Visitor (AV)…starting in 2016. Talking to people I have met since becoming involved with MNDA East Kent I have been struck by the resilience and tenacity that many of these folks show…some are people living with the disease, others are relatives, carers or friends of theirs. A common factor shown by so many is that of supporting each other in the face of this vile and debilitating disease.
The camaraderie I have witnessed first hand is incredible, many form friendships…co-supporting each other and sharing ideas and treatment options. Some have set up fund raising initiatives, and I am aware that quite a number use the network of social media to keep in touch, some are happy to have an Association Visitor offering friendship and support, and some like to attend meetings…networking with others facing similar difficulties. It’s so rewarding to work together with these people and I really enjoy doing so.
One of the many challenges facing PwMND is the gradual reduction of their own physical abilities meaning that activities which were easy for them previously become difficult or indeed impossible. It means that travelling options are very restricted, they may no longer be able to drive, and public transport options may well be very limited. Many of the support activities in East Kent are centred around Canterbury or Ashford…. which means an almost impossible trek for many living in the rural or coastal areas of Kent, such as Thanet. Several voiced their disappointment at not being able to attend these meetings without supreme efforts by themselves and their carers.
Upon discussion about these difficulties with the MNDA East Kent committee we decided to offer for a trial period, of three months, a Thanet based support group, meeting once a month in the afternoon in a suitably placed venue, and one which offered many appropriate facilities.
Several options for a venue were explored. We decided on The Botany Bay Hotel in Kingsgate which is ideally situated for all of Thanet, with plenty of parking, access and facilities are excellent. The manager and staff are extremely helpful and willing to accommodate us. Our trial period starting in September 2017, on the last Wednesday of each month from 3pm until 5pm, and we call it Tea by the Sea!!
We contacted many people by telephone and email to invite them to come. We offer tea or coffee with cake or scones, and have been delighted at the response. Each meeting has been attended by PwMND, families and carers. These are small meetings, but so friendly, everyone getting to know each other, sharing experiences, frustrations and coping mechanisms in a spirit of camaraderie and friendship. The hotel has allowed us to use a small private function room for no extra charge, all we pay for is the tea and cake consumed. The first meeting was attended by eight people, subsequently the attendance varied from 16 down to four (the weather was typically coastal atrocious that day!!)
The trial period of three months ended in November, but by popular request was extended to include December and will now continue into 2018, on the last Wednesday of each month. The next dates are as follows:
Wed July 25th and Wed August 29th all between 3 and 5pm.
Botany Bay Hotel, Marine Drive, Kingsgate, Broadstairs, Kent CT10 3LG
Please make a note of these dates. You can be sure of a warm welcome, and the refreshments are pretty good too!!