New Newsletter – Click on image to download a copy
New Group Chair
The new Chair of the East Kent group is David Ward. David lives in Tenterden with his wife Emma MacLennan. They lost their much loved son Alex to MND in July 2020.
Alex was just 31 and serving as an Ashford Borough Councillor. After experiencing eight
months of increasing difficulties with walking Alex was finally diagnosed with MND in February 2020.
Just two weeks before he died Alex married his long term partner Elizabeth in a ceremony at David and Emma’s home in Tenterden. David and Emma fervently hope for a cure for this
terrible disease and are committed to supporting the work of the MND. Association both nationally and locally.
The Alex Ward Memorial Lecture on Public Service will be held from 15.00-16.30 on Saturday 23rd July at St Mildred’s Church, Tenterden TN30 6AT.
The guest speaker will be Lord Dubs of Battersea, the leading campaigner for refugees, especially children. Entrance is free but donations will be encouraged to the
East Kent MNDA. For more information email: davidjward@btinternet.com
Battling for Butch MNDA GalaBall
Kent Sings to End MND
Coastal Walk to D’Feet MND 18th June 2022
After 2 unfortunate years during which we have been unable to hold our Coastal Walk to D’Feet MND, thankfully we are now able to plan for a walk late this year. The walk will take place on 18th June.
There will be three walk options.
- A long walk (approx. 24 miles) Whitstable to Broadstairs.
- A medium length walk (approx. 11 miles) Minnis Bay to Broadstairs.
- A short walk (approx. 6 miles) Margate to Broadstairs.
There is an entrance fee of £10 which includes a tee shirt (collected on the day), training program, detailed plan of walk, and full insurance. Only registered walkers can walk and they must wear the tee shirt for insurance purposes.
Each walker is requested to find sponsorship to support people living with MND in East Kent. There is no obligation to raise sponsorship but all support is greatly appreciated.
To register for the walk, please visit www.mnda-eastkent.org.uk/walk2022 , complete the form, then follow the link to Just Giving to pay your entry fee of £10.
If you intend to set up your own JustGiving page, we are happy for you to do so. Please select MNDA as your charity and then please mention MNDA East Kent in your story to ensure that funds you raise are used for people living with MND in East Kent. Once you have set up your JustGiving Page, please link it to our team at www.justgiving.com/team/coastalwalk2022 so we can keep track of the total funds we raise.
If you want to make a donation in support but not register please visit https://www.justgiving.com/fundraising/mnda-east-kent22
Should you experience any difficulties please email webmaster@mnda-eastkent.org.uk
The route is shown on the map above.
Training programs for the walks, the Walk Plan, sponsorship forms, posters and flyers can be downloaded below:
24 mile walk training programme download PDF
11 mile walk training programme download PDF
Walking Route and Plan download PDF
If you are able to display a poster, we would be grateful if you could print a copy and display it.
We thank our sponsors, with whose help we are able to raise substantial sums to help people living with MND in East Kent
Super Christmas Lunch
The East Kent MNDA Group were excited way back in August to start discussions with The Yarrow Hotel in Broadstairs for our Christmas Lunch. This was the first time since the earliest Lockdown that we’d been able to plan such an event. With everything in place: Saturday 11 December as the date, menus chosen and 40+ people scheduled to come, we were hit by the latest fears from Omicron the day prior to the event. It was early days so we decided to go ahead with the planned event but make a number of safety requirements, e.g. people needed to have had a booster jab, taken a Lateral Flow Test on the morning of the day and observe social distancing wherever possible. The hotel was visited earlier on the Saturday and table positioning and ventilation checked. Also, any idea of holding a raffle was, sadly, abandoned as it would have created too much movement around the room. By lunchtime only one pwMND and his carer cancelled which was a huge relief.
Our new Chairman David Ward, gave a speech at the end of the lunch and long service presentations were made to Chrissie Batts and Judy Keay. Both were for 10 years of service to the MNDA East Kent community and both richly deserved.
The event was a huge success with people happy to see each other after a long time + the hotel did us proud, as always, with excellent food, service and attentiveness by staff. In fact, many people didn’t leave until 3-4!!
Our dearest hope is that next year Covid will be less of a worry.
United to end MND success
The United To End MND campaign – led by the MND Association, MND Scotland, My Name’5 Doddie Foundation, people with MND and neurologists – has successfully secured a Government investment of £50 million over five years into targeted MND research.
The Government made the announcement in the middle of November with Prime Minister Boris Johnson saying:
“We are going to throw the full weight of government, industry and civil society behind a new British-led scientific mission to transform the fight against this devastating disease.”
The investment pledge came after two years of campaigning by the coalition and following a four month media campaign in the Sunday Express under the banner ‘Fund the fight to cure MND’.
Secretary of State for Health and Social Care Sajid Javid, who met the campaigners at Westminster in September, described the campaign as ‘hugely important’.
Work started immediately on seeking meetings with Ministers to confirm when and how the funds will be made available and the most effective way to target the investment.
For more information visit United to End MND | MND Association and
From Cambridgeshire to Kent with love…
My name is Sally Arnott and I live in Melbourn near Cambridge with my husband Richard and our four boys. So why have we been raising funds for East Kent MNDA? My sister Helen and her husband Simon Flack live near Sandwich in Kent. At the end of July 2019 they celebrated their Silver Wedding Anniversary with a super barn dance near Saffron Walden for all their friends and family. It was such a wonderful party yet we had no idea that their lives were soon to be be upended. During August Simon accepted that his speech and general health were deteriorating and agreed to seek medical advice. He was eventually tested in January 2020 and diagnosed with Progressive Bulbar Palsy MND. The MND Association has provided Simon and Helen with such exceptional support and guidance that I decided to hold an Autumn Half Term Family Fundraiser by way of thanks and to ensure that their great work can continue, especially as fundraising events have been severely limited by Covid.
Because of the challenge of the global pandemic, it was important to do something people could do in their household bubbles. I created a family bike ride route with a hunt for clues and a woodland animal hunt with autumn leaf craft suggestions, both routes for £5 per family. I held a raffle with the generous support of local businesses kindly donating items including a cream tea for two, a mini facial, fancy tea and coffee, chocolates and prosecco and a large fruit basket. The Autumn Half Term Family Fundraiser finished on Sunday 1st Nov to coincide with our village walking market where my sister Jane, her partner Allen and I held a cake stall and sold more raffle tickets. I’m delighted to say that in total we made over £1600. It was so much more than I was originally hoping for and seeing the donations on the branch’s Justgiving page gave us some positivity at a difficult time! Since that event, Jane raised a further £200 from a cake stall at her workplace, Sawston Medical Centre near Cambridge, with other donations online from her colleagues. People have been amazingly generous!
From Kent to Cambridgeshire with a massive thank you ………….
Our East Kent Group and people living with MND in East Kent can’t thank Sally, Jane and their families enough for the fundraising events they have organised to raise over £1,800. This huge sum will go a long way to providing additional support for people living here with MND, especially in these Covid difficult times. Seeing great photos of the children taking part has lead us to believe we will definitely steal the idea of the Family Woodland Bike Ride – in the spring/summer of next year!!!!!
Mission 5000
The coronavirus pandemic has resulted in many community fundraising events and mass sporting challenges being cancelled or postponed. MNDA wanted to create an event to ensure existing fundraisers could still put their training to good use and continue their fundraising, whilst also allowing us to recruit new fundraisers to support the fight against MND at this difficult time. As a result we have developed a mass virtual challenge; Mission 5000.
Mission 5000 – the message
5,000 people with motor neurone disease. 5,000 miles to complete. A community uniting to cover the distance. How far will you go?
We expect to lose over £2 million this year due to the cancellation of community and sporting events as a result of the COVID-19 pandemic. But our fight against MND cannot be delayed. People affected by the disease need our support now, they need their voices heard today. People facing MND in the future need our vital research to continue. That’s why we’re on a mission, and we need you to join us.
Together we want to cover 5,000 miles, that’s a mile for every person living with MND in the UK today. Take part and run, walk, swim, cycle or even scoot however far you can. Every penny you raise will bring us closer to achieving our ultimate mission, a world free from MND.
Mission 5000 – more info
Challenge runs from Sunday 13 September to Sunday 18 October. Participants can cover their pledged miles on one day, week or over the whole 5 week period.
Register by visiting www.mndassociation.org/mission5000
Participants who raise over £100 will receive a limited edition Mission 5000 medal
Participants can cover miles using any discipline they choose, alone or as part of a team. This isn’t just a running challenge and we’d love to see whole families taking part together 🙂
Please support us by registering to walk, run, cycle any number of miles. Please create a JustGiving page at https://home.justgiving.com/ then please join our JustGiving team at https://www.justgiving.com/team/Mission5000EastKent
A Million from an MNDA Warrior in East Kent
“Right….I have decided “ he said. “What have you decided ?” I said curious, even though I was immersed in my breadmaking. “ I’m going to do a million!! “….I was even more curious by now! A million pounds perhaps (well we are always trying to raise funds) but a MILLION? Our normal fund raising activities have been severely curtailed this year, no social gatherings, face to face quizzes, cake sales or group walks have been possible…so this seemed almost unachievable.
During this uniquely trying, Covid ridden, frightening, challenging time even a hundred would be fabulous….but a million? I looked at Clive with admiration….”A million pounds, that would be astounding “ I said….he gave me one of those looks….”Not pounds silly, I shall be cycling a million!!”…”Miles or kilometres ? That’s an awful long way whichever”….Clive sighed and then explained he had set himself a target to cycle a million metres during this, his seventy fifth year to try and raise funds to support people living with MND living in our area, East Kent!! It sounded almost impossible when he first told me…but here we are, 10 months on and only 68,000 metres to finish what seemed an insurmountable task at the start!
The secret to completing the gargantuan task is, of course planning, organisation and having a VERY understanding wife!! Come rain or shine, wind or hail, Clive has been pounding away every day on his bike….and bit by bit, metre by metre the target is being met! Well….perhaps not in the way he would have chosen back in October 2019…..the cycle paths are so near and yet so far, we have both had to shield throughout the pandemic….who knew this virus would nearly scupper the planned ride last year? No….a bit of lateral thinking, and an old bike stand later the ride has been almost entirely completed in our shed!! So social distancing and health needs have been met more than adequately. Clive has clambered on his trusty (rusty!!) steed every day and is nearly there. The almost daily plea “ Have you seen my cycling shorts?” has been regularly met with “ Where did you last put them?” The aching cramped legs are now rippling with muscles …and a little money has been raised on the Just Giving Page to try and supplement the hugely reduced funds raised this year. Who knows…a million might mean exactly that..we will just have to see on his 75th birthday on September 26th when this challenge is complete.
Lynn Hudson August 2020
Donations https://www.justgiving.com/fundraising/mndamillionmetres
Original story https://mnda-eastkent.org.uk/wordpress/?p=3058