United to end MND success

United to end MND Group outside Downing Street

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

https://www.gov.uk/government/news/government-to-invest-375-million-in-neurodegenerative-disease-research.

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.

Clive Hudson cycling in his shed.

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

Cycle Ride for MNDA

The Pru100 cycle ride was cancelled this year due to Corona Virus. Mick Rendell has decided to cycle an alternative 100 miles in support of Motor Neurone Disease Association, as a colleague has been diagnosed diagnosed with the illness, robbing him and his family of the life they had together. 

Mick and Jackie Rendell

Mick decided to ride on the weekend of the Pru100 event. He will ride 100 miles on Saturday 15th August.  Mick also persuaded his wife Jackie to ride Pru46 miles tandem on Sunday 16th. After a hard 100 miles on the Saturday, Jackie may need to do all the work on the Sunday.

In Mick’s words

It was my intention to ride the Pru100 event again this year and ride in aid of the Motor Neurone Disease Association of East Kent.  I am riding on behalf of a colleague Craig Whitelaw who is currently suffering from this debilitating illness. Craig was an energetic Broker Consultant and who is now confined to a wheelchair unable to walk or use his hands. In the past year Craig has been robbed of normal family life and has a wife a two young children who now have to watch their husband/father suffer.

I am (fingers crossed, touch wood etc) fit enough to do the things I want (mainly cycling) without issues and feel I can help people who can’t by raising money for the worthwhile causes who support them.  The Pru100 like many events has been cancelled this year so I have signed up to do 100 miles around Kent (much harder than the Pru course) as an alternative.  The Pru run 3 events, a 19 mile ride, a 46 mile and the 100 mile, so we have registered for two distances and I will ride the 100 miles on the Saturday solo and Jackie (my wife) and I will ride 46 miles on the tandem on Sunday.

Most of us are fortunate to still be fit and healthy and Craig is one of us, a member of our industry so please take the time to look at the link below and give generously where possible.

Mick Rendell July 2020.

Mick Rendell

The course is planned and Mick has a few friends joining him. The course is about as hard as you can make it in Kent with 5,700 ft of climbing.

You can see the full story by visiting https://www.justgiving.com/fundraising/mick-and-jackie-rendell1

Please give generously and thank you for your support. 

On line Support Meeting

We will be holding an on-line support meeting on Wednesday 15th July at 11am. We will be using Zoom, you can download the app at https://zoom.us/support/download

If you are living with MND or have been affected by MND, you are very welcome to join us.

We very much hope this meeting will be a success and we will consider further meetings if there is demand. We feel it might be possible to have meetings for specific activities, such as music, films, books or indeed anything for which there is demand from members.

If you would like to attend on Wednesday 15th July please send an email to webmaster@mnda-eastkent.org.uk or telephone 01843 579941.

Chair for East Kent Group of MNDA

Our current chairman is standing down in September and we are seeking a volunteer to fill this role.

As Branch Chair, you will:

• Ensure continued delivery and development of our local work to support people with MND and their families

• Plan, prepare for and facilitate committee meetings
• Ensure appropriate decisions are made in a timely way when required
• Support Branch volunteers in planning and coordinating Branch activities
• Ensure Branch volunteers are aware of and follow the Association’s policies and procedures
• Induct and mentor new volunteers
• Work in partnership with staff to recruit new volunteers
• Act as an ambassador for the Association and as a host at Branch events.

This is an excellent opportunity to develop utilise your leadership skills and get involved with your local community. We are looking for someone reliable, warm and empathetic with the ability to motivate others. Leadership skills and experience of chairing meetings would be an advantage, along with good organisational and listening skills.

The group Chair will usually work for approximately 7-10 hours a week and facilitate on average 6 committee meetings a year and be involved in perhaps another dozen meetings during the year.

You’ll be inducted into the role and informed about the Association. As part of this, you will receive e-learning, face-to-face training and mentoring.

You can apply for this role here or you may contact chair@mnda-eastkent.org.uk.

Special Appeal for Funds

During the current Covid 19 pandemic, we have been obliged to cancell many fund raising events and this has left us some £10,000 short of funds in 2020 to provide support to people living with MND and their families in East Kent.

The East Kent Branch of the Motor Neurone Disease Association (MNDA) has launched a special appeal for donations to maintain their vital support for people living with the terminal illness Motor Neurone Disease (MND) in East Kent.

If we are unable to increase our funds over the next few months, we may have to reduce the level and types of support that we currently provide. Clearly that is not something we wish to happen as we know how much these things mean to people living with MND. 

If you are one of the lucky ones who is saving money during this crisis, by not going out, holidaying, not visiting the hairdresser, please consider sending some of those savings to support people living with MND please visit:

https://www.justgiving.com/fundraising/mnda-east-kent-special-appeal

We completely understand that not everyone is in a position to support us but if you are able to donate, we will ensure every penny will be spent in continuing to provide this vital support for people in East Kent, at a time when it is needed more than ever.

Thank you from all of us at the East Kent Group of the MND Association.

Video Consultations

One of our members wrote the following report about services being offerred during the current pandemic crisis.

Due to Covid-19 my normal clinic was cancelled. I was offered a video consultation instead.

This would be with the same consultant and specialist nurse that I would have seen.

The only stipulation was that I had to have a smartphone (ios or android).

If I didn’t have a smartphone there was a contact number to call to advise them.

On the day of my appointment I received a text message with a link that I had to press at the time of my appointment.

This opened a video screen on my phone where I could see the consultant and specialist nurse in a room.

The video quality was very good and the audio was clear. I had no buffering issues. Although I have a very poor mobile phone signal I have a very fast internet connection so I tend to run everything through my internet connection.

I felt that I had had a proper consultation and had covered everything that I wanted to ask (I had made some notes beforehand).

I didn’t feel rushed.

An issue was that normally before the appointment I would have blood/lung function tests at the hospital and then discussed at the meeting.

This could not happen.

Another issue is privacy. Its important that you are somewhere quiet and can talk freely. Likewise it is important at the hospital that it is treated as though the patient is physically in the room.

I would certainly like to use the system again.

When we are in more ‘normal’ times perhaps we could be given a choice hospital attendance or video consultation.

Chrissie Batts MND Specialist Nurse who was part of the above consultation added the following.

Since the start of the Covid-19 virus which has caused havoc in our lives, we have all had to adapt.  Being a technophobe with little knowledge, this has been even more of a challenge.

Usually, I would meet people living with MND at home or in the clinic, having face to face to discussions.  As clinics and home visits became suspended, I was asked to trial the new system that EKHUFT were introducing to support consultations.

I trialled this with a couple of colleagues prior to breaking it out to patients!

I surprised myself as to how easy this system is to use, so am encouraging other nurses to use this system.  Obviously it isn’t the same as meeting face to face but, at the present time, it is solving a few difficulties.

If you have used the system with me please let me know your thoughts which I can share with the IT team