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Northants Branch AGM Sunday April 8th 2018

30 people attended the AGM of the Northants Branch MND Association. We were very pleased that the Mayor and Mayoress of Northampton were able to join us. Our quest speaker was Ollie Hiscoe a Community Manager from David Niven House National Office of the MND Association.

 

The chair report was given and events of the year were highlighted. The chair thanked the committee, A’V’s, members volunteers, staff at DNH, the trustees and all who support us every year. Professor Stephen Hawking was remembered as were our own members and people living with MND who have lost their battle this past year. The treasurer presented the financial report and this was proposed, seconded and agreed by the floor. Branch elections took place, with no resignations of branch officers, these were accepted. 2 committee members stood down Paula Solomon and Derrick Peasland, these members were thanked by the chair and Derrick was presented with an acknowledgement and signed card for over 25yrs service. A card was also signed for Paula, but in her absence this will be forwarded to her.

 

Our speaker Ollie then took the floor and spoke about the importance of fundraising, about getting it right, and the significant part that social media plays in fundraising and awareness bringing it to the wider population. There was a time for Qs and As on any of the presentations.

 

The committee, AVs and volunteers were thanked by Geoff Hull on behalf of Chris our newsletter Editor for their support and commitment to the drop–ins at the Northampton Garden Centre. Diana Smith gave the vote of thanks to Ollie Hiscoe and to the Mayor and Mayoress and presented the Mayoress with a plant. Jackie and Dave ran a very successful raffle raising £84 for branch funds. The afternoon ended with tea and cakes which gave everyone a chance to chat.

 

Jay Lucas Move the World Challenge

This is an update on Jay’s Move The World Challenge

The challenge is on the way home with 7.500 miles to go, at the moment the number of miles covered has reached the U.S.A. somewhere between Dallas and New York with12 weeks to complete the journey ending in Abington Park Northampton on Saturday May 5th 2018. People have been doing all sorts of things to cover the 24.881 miles ,running, swimming, rowing, climbing, wheelchair running, jogging anything they could think of to knock off the miles. To follow the challenge or join in to help cover the last miles go to the link www.mndworld.co.uk or to donate www.justgiving.com/mndworld

 

Challenge Jan

David warren
David Warren

My name is Jan Warren and I need your help. I have commenced a year of ‘Challenge Jan’ through Just Giving in aid of the Motor Neurone Disease Association https://www.justgiving.com/fundraising/janwarren184

 

In February 2014 my husband David and I moved to our beautiful new house here in Burton Latimer. The retirement home we had always dreamed of whilst working so hard in London for 25 years.
Sadly on 1st May 2015 David was diagnosed with MND and lost his life to this insidious disease just 20 weeks later.

 

There is no cure nor drug which treats this disease the only certain thing is death. I became a trustee in 2016 twelve months after Davids death in order to help using my skills in accountancy and as his carer to try and help future sufferers and find a cure.

 

So I am now hoping that your readers will help by challenging me to do tasks for the next year and contribute when I fulfill their task through donating to my Just Giving Page.

 

Currently I have been tasked with:

  • Ten random acts of kindness
  • A ‘Cocktail crawl’ involving the whole village
  • An ice bucket/water hose down challenge in conjunction with The Burton Latimer Fire Brigade (summer schedule!!!)
  • Sponsored bake sale and coffee morning
  • Sponsored relay walk from Burton to Rushden Lakes (hopefully involving the stores at Rushden Lakes)
  • Sponsored volunteering at two local hospices dealing with MND patients

But I need more ideas and more people happy to get involved and/or donate. Can your readers help?

 

 

Waitrose Wootton Cheque Presentation

Wootton Waitrose

 

In September members of the branch who attend the Drop–in sessions went to Waitrose Store to receive a cheque to the value of £420.00.

 

This was a result of the Community Matters Green Box tokens.

 

Our grateful thanks to all who contributed to the branch through this very worthwhile scheme.

 

 

 

 

 

Woodland Hospital Cheque Presentation

Woodland Hospital

 

Peter and I had the privilege of being invited to the Woodland Hospital Kettering for a cheque presentation.

 

The money was raised by staff through many fundraising events, i.e. raffles, cake bakes quiz nights, lottery ball.

 

The total money raised was £2,685.00 which was a wonderful boost to our funds to help us continue to support people living with MND in Northamptonshire.

 

 

 

 

Cynthia Spencer Day Care with Sally Light

On Thursday November 9th, 27 of us met at Cynthia Spencer Day Care Unit, for tea/coffee, cake and a chat, and to meet and talk to Sally Light, CEO of the Motor Neurone Disease Association.

 

It was a very enjoyable morning, which gave everyone a good chance to chat while enjoying a cuppa and cake.

 

Northampton Half Marathon

On Sunday September 3rd, Dave and myself met at Northampton Town Hall along with many others to Cheer off runners from David Niven House along with other runners, all running for the MNDA in the Northampton Half marathon. David Soloman and Jo Cole were there and were pushed round the course.

 

The event was very well supported by many runners from arouns the country. They set off at 9.30 and the start was also the 3 mile point, within 15 minutes the leaders were going past. The finish was at Delepre Abbey so we went there to cheer as the runners finished. The leader finished in 1 hour 14 minutes, soon to be followed by the others It took about 2 1/2 hours for everyone to get back.

 

Northampton Half Marathon

 

When the MND team came towards the finish they were cheered by everyone. Well done Team MNDA! It was difficult towards the end for the wheelchairs but you all finished. It was a bit chilly but that was fine for all those running. The atmosphere was brilliant. A very successful day.

Jackie Atkins

 

MNDAssociation Annual Conference and AGM Saturday July 8th 2017

The conference and AGM was held at the Raddison Blu Hotel East Midlands Airport.

Members of the Northants Branch attended, we were welcomed by the Chair of Trustees Alun Owen. C.E.O. Sally Light reflected on the 2016, thanked Volunteers and Supporters for their hard work and commitment.

 

Chris James Director of External Affairs, Steve Bell and Karen Pearce Directors of Care North and South presented "Transforming MND Care and the impact of the NICE guidelines on MND".

 

We then transferred to learning workshops of which there were 4:

  • Fundraising -- Money for nothing Kathryn Sheldon ,Richard Shackelford Regional Fundraisers
  • Care Update ---Benefits ,Communication Aids and Voice Banking Matthew Hollis Communication Aids Co-ordinator ,Vicky Eales Speech and Language Therapist
  • Are we there yet ? The journey from awareness to Action Chris James and Colin Morris Head of Communications
  • Local and Regional Finance Linda Cherrington Director of Finance andf Andrew Zielinski Head of Finance.

These workshops were very well received by members.

 

The AGM and questions followed after lunch. The Guest Speaker for the day was Professor Ammar Al-Chalabi. The afternoon ended with final thoughts ,networking and refreshments.

 

To find out more about the 32nd Conference and AGM go to the website www.mndassociation.org/

 

Northampton Council adopt MND Charter

On Monday July 10th 2017 , Jackie and Dave Atkins went with Scott Maloney from DNH to a council meeting at The Guildhall Northampton, where the council were adopting The MND Charter. Scott gave a 3 minute speech and at the end of the meeting the Charter was adopted.

 

Scott's speech
Scott's speech

 

Fundraisers clock up the miles to move around the World in 365 days!

When Jay Lucas worked out the circumference of the Earth was approximately 24,881 miles long, he had a crazy thought - and within a few days he’d created a new and unique virtual fundraising challenge.

 

Jay, who has been raising funds for the MND Association since his father died from this cruel disease back in 2008, took to Facebook, and within a few days the ‘MND Move the World Challenge’ was created.

 

Launching on Saturday 6th May 2017, 42 of Jay’s friends, family and Facebook acquaintances from the UK and Overseas, will attempt to run, swim, row, cycle, jog or walk the whole distance of the Earths diameter within 1 year. Each time they ‘move’ their distance will be logged on a specially designed website where they’ll be able to keep track of how far they’ve covered.

 

Jay said, ‘For the vast majority, Motor Neurone Disease (MND) is a death sentence & for some it is a lifetime of reliance on others. Sadly, for my Pops, his fate was the former & a little over a year after his formal diagnosis, he died.

 

Until it hit our family like a thunderbolt, I knew nothing of what MND was and how this cruel disease can affect how you walk, talk, eat, drink and breathe.

 

Although there is currently no cure for MND, symptoms can be managed to help achieve the best possible quality of life... & that is the point of this challenge”.

 

MND is a rapidly progressive and fatal disease, which can affect any adult at any time and attacks the motor neurones that send messages from the brain to the muscles, leaving people unable to walk, talk or feed themselves.

 

The cause of the disease is unknown and there is no known cure. Around 5,000 people in the UK have MND at any one time, with half of people with the disease dying within 14 months of diagnosis. It kills five people every day in the UK.

 

The Motor Neurone Disease (MND) Association is the only national organisation in England, Wales and Northern Ireland dedicated to the support of people with MND and those who care for them. The Association funds research to understand what causes MND, how to diagnose it and, most importantly, how to effectively treat it so that it no longer devastates lives.

 

Jay continues, “In the team, we have many people affected by and some diagnosed with MND. I’m overwhelmed by the support I’ve had so far and it will be fantastic to see how well we all do over the next year, moving around the world to raise invaluable funds to help those with MND who may now be struggling to move, and also support further research into this horrendous, indiscriminating illness’.

 

Sharon King, Regional Fundraiser for the MND Association said “Jay is such a dedicated and inspirational supporter. Without people like him the MND Association simply would not be able to provide its vital support services and fund research to find a cure. Together we are making a real difference for people affected by this devastating disease.”

 

The ‘start line launch’ of the ‘MND Move the World Challenge’ will take place at 12 noon on Saturday 6th May at Abington Park, Northampton, where dozens of the team will run the first mile together.

 

To support the ‘MND Move the World Challenge’ team and make a donation simply visit www.justgiving.com/fundraising/mndworld or text to donate: MTWC99

 

Eating and drinking with motor neurone disease (MND)

If MND causes difficulty with movement and mobility, this can affect mealtimes. If MND affects the way you swallow, you may find it harder to eat and drink. If this happens, you are likely to lose weight, which can impact on your wellbeing. As social occasions often involve food and drink, swallowing difficulties can also affect how you feel with other people, but we have information to help.

 

This full colour publication reads more like a cookery book than a guide. Three couples from the Northants branch feature throughout.

 

Christmas Buffet Lunch

A very successful Christmas Lunch was held on Sunday December 11th 2016. The event was very well supported and all enjoyed good food ,excellent company and entertainment from “ Open Stage “. We would like to thank all who helped to make the afternoon special and to all who attended.

 

We were especially pleased to welcome the Deputy Mayor, Councillor Gareth Eales and Deputy Mayoress Councillor Terrie Eales ,who showed great interest to learn more about the branch and MND.

 

Our grateful thanks go to Carol and Helen for the wonderful buffet and to Barclays from where Helen had secured a sponsorship for the food. The raffle organised by Jackie and Dave raised £212. Walter Loweth and Shirley Botterill received their Long Service Awards 10 and 5 years respectively.

 

AGM and CONFERENCE MND ASSOCIATION SATURDAY SEPTEMBER 10TH 2016

A group of 8 members of Northants Branch attended the recent AGM & Conference at the Raddison Blu hotel East Midlands Airport. This is always a very enjoyable and uplifting day, meeting friends old and new in the Association. Up dates and developments of the association and branches were presented. We were welcomed by Alun Owen Chair of Trustees, Sally Light C.E.O. reflected on the past year 2015/2016, highlighting the NICE guidelines, the opening of the 20th Care Centre in Brighton very soon with plans for 2 more, and our support for young people.

 

Chris Wade Director of Engagement highlighted the poor behaviour of some charities and the impact that had presented. New recruitment materials to inspire and encourage new volunteers, and how staff and volunteers change peoples lives.

 

We were then transferred to Learning Workshops which lead into lunch with networking and information stands. The workshops were:

  • How to Develop successful corporate partnerships
  • Learn more about the MND register
  • What the NICE guidelines on MND means to you
  • Campaigning and raising awareness

The AGM commenced the afternoon followed by questions. The guest speaker was Professor Dame Pamela Shaw Consultant Neurologist, Director of the Sheffield Care and Research Centre for Motor Neurone Disorders and Professor of Neurology and Pro Vice –Chancellor for the Faculty of Medicine and Dentistry and Health at the University of Sheffield. Quite a title for a brilliant and very knowledgeable mind. Dame Pamela spoke about the "Progress in the understanding of MND and prospects for new therapy development."

 

The afternoon ended with final thoughts networking and refreshment. If you wish to find out more about the day please go to the website www.mndassociation.org where you will find the links.

 

Walk to D’Feet June 18th 2016

Here we are at Irchester Country Park setting off for our Walk to D'Feet...

 

Walk to D'Feet 2016

 

 

CELL at The Castle Theatre Wellingborough - 11th May 2016

Cell collection

The Company Cell portrayed the story of Ted diagnosed with MND. Ted goes on a trip of a life time with his pet fish. He rushes from the markets of Lille to the romance of Venice. Heart warming and humorous it features puppetry, physical theatre and original score to tell the story of one man's final adventure.

 

Peter and Rob set up in the foyer with display leaflets and buckets. Staff from David Niven House attended the show, this was held in the Studio the smaller of the 2 theatres holding 80 people. A collection raised £52.56.

 

 

 

 

 

Concert - 29th April 2016

A very successful concert took place at the Windmill Club Rushden on Friday April 29th. Wollaston Singers sang numbers from their recent local show including medleys from Les Miserable, Mamma Mia and many popular songs. Mario Wolfgang was a great hit playing his acoustic guitar and singing songs some he had written himself. Mario had recently appeared on BBC 1 The Voice. An amazing raffle helped boost the funds and £674 was raised on the night. Our thanks to all who took part, those who contributed raffle prizes and to all who came to make the evening the success it was.

 

Collection  - SEVENS INN PUB

On April 16th at very short notice Sharon and Sandy went to the SEVENS INN on the Welford Road for a collection. We had been invited by the Landlord/Manager Dan Coles for the local derby between Northampton Saints and Leicester Tigers end of season rugby match. The pub being opposite Franklins Gardens there were lots of supporters of both teams gathering. Peter and Kate joined Sandy and Sharon a bit later, the collection raised £248 36. A letter of thanks was sent to Dan, our thanks to all who contributed and to Sharon and Sandy for stepping in just a few days before.

 

AGM April 10th 2016

24 people attended the recent AGM of Northants Branch Sunday April 10th. Usual business took place. Chair gave her annual report highlighting events through the year and thanking committee members, members, their families and friends for all the support during 2015. Finance report by the treasurer was followed by election of officers and branch committee.

 

Chair. Kate Inchley

Vice Chair. Rob Nixon

Treasurer. Colin Byer

Secretary. Gerry Skipper-Byer

Web-Master. Derrick Peasland

Committee Members. Dave Atkins, Jackie Atkins, Ali Buttress, Priscilla Davies Maureen Sanders, Kevin White, Sally Wilkins.

 

Chris Hull stood down from the committee but still continues as Newsletter Editor, it happened to be Chris’s birthday and she was given a card and flowers, thanked for her work on the committee and we are grateful she remains involved.

 

There were no Long Service Medals this year.

 

Our guest speakers were Diana Smith, member and Scott Maloney RCDA Central Midlands. Diana presented a very informative and interesting talk and photographs of her recent cruise visiting many places and telling us about customs and cultures. Scott Introduced himself, only being in the post at the association for a few months, and previously with MND Connect and now Regional Care Development Advisor and Co-ordinator for the Association Visitors. The afternoon ended with tea and cakes.

Kate Inchley

 

Waitrose Green Box Community Matters - February 2016

Waitrose cheque

During the month of February Northants Branch were fortunate to be part of the green box project in Towcester. £628 was raised.

 

Thanks to all who supported us.


 

Christmas Party Buffet Lunch

Another successful Christmas celebration was held on Sunday December 13th 2015 at our usual venue.

Open Stage

 

Over 50 people attended and enjoyed a great lunch, which this year we organised ourselves, helped by the very capable hands of Carol and Helen who are friends of Vice Chair Rob and we extend our thanks to them.

 

The raffle raised a wonderful £184.00 and we were entertained by Open Stage a choir who Kevin, a committee member sings with, a very enjoyable half an hour of entertainment especially from the pianist. I express my thanks to all members committee members and friends who helped once again to make the afternoon so enjoyable.
Kate, Branch Chair.

 

 

ASDA Cheque Presentation

Asda Cheque Presentation

On December 8th I went to ASDA in Far Cotton to receive a cheque for £200.00 in support of Northants Branch through the green box initiative.

 

Someone unknown to us had kindly nominated us for the scheme and we send our grateful thanks to that person and to ASDA.

 

Kate Inchley

 

 

 

 

 

 

 

 

 

 

 

 

Table Sale Saturday 28th November 2015

On Saturday November 28th, Kate, Peter, Dave and Jackie had a table at a sale held in Wollaston Village Hall, We ran a tombola, sold knitted items and some bric a brac. It was extremely well supported , especially as Santa was there. There was a lovely festive atmosphere. We raised £122.

 

 

 

Coffee Morning Saturday October 24th 2015

A very successful Coffee Morning was held in Wollaston raising an amazing total of £943.95 for Northants Branch this did include £291.80 of MND Christmas Card sales.

 

We sold lots of cakes, ran a great raffle with some lovely prizes around 60 people attended.

 

Mike Hollowell a local gentleman living in Wollaston has written and published a book entitled The Pig That Squealed. The book is a collection of thoughts and reminiscences of life in rural Northamptonshire from 1935 to the mid 1950’s obviously covering the times through the second world war.

 

The cost of the book is £7 with Mike donating £2 of every copy sold to MND. Mike came to the coffee morning and signed each book that was sold.

 

Our grateful thanks go to all who baked cakes donated raffle prizes and to all who came to support us.

Walk to D’feet June 27th 2015

Irchester Country Park Northants.

40 people joined us for the Walk to D’feet on Saturday June 27th. It was a lovely sunny day. With the gazebo set up and people registered, we had a group photo before setting off. There were 3 different trails to take around the park all different lengths to walk.

 

Some did all three trails, the surroundings are beautiful and everyone enjoyed the day. So far we have raised £835, with more to come in through people who set up their own just giving pages. Many brought a picnic lunch or went to the cafe for a well deserved lunch. Each walker was given a WTD T-shirt and awarded a certificate .

 

Walk to D'feet

 

 

Downing Street Tuesday June 16th 2015

Charter Presentation and Westminster Reception

Our C.E.O. Sally Light and members of the MND Association presented our Charter at 10 Downing Street. 33.360 signatures were collected since the induction of the charter 3 years ago.

 

The purpose of this is to show the new Government the strength of support behind the charter and the importance of working towards achieving the Charter’s vision of the right care, in the right place at the right time for people with MND and their carers.

 

This was followed by a parliamentary reception for MPs to meet our volunteers. Kate Inchley Chair/Branch Contact and Rob Nixon Vice Chair were nominated to attend on behalf of Northants Branch. This gave us an opportunity to meet with local MPs to raise awareness of MND and the association to attempt to build relationships with new and re-elected MPs. Unfortunately our own local MP was unable to attend, but we did meet with David Mackintosh MP from South Northants and Philip Hollobone from Kettering. 130 volunteers and 75 parliamentarians attended.

 

There were 3 speakers:

  • Sally Light Chief Executive MND Association
  • David Setters Living with MND and a Campaigns Contact
  • Charlotte Hawkins affected by MND and ITV Good Morning Britain Presenter.

This was a very worthwhile and enjoyable experience.

 

 

Bike Ride - 11th June 2015

by Jackie Atkins

On Thursday June 11th Dave and myself went to David Niven House to see CEO Sally Light start off on her bike ride along with 4 others. Anglia television were there and I was interviewed by Sarah Cooper who asked me about my connections to Motor Neurone Disease. This wasn't shown on the Anglia News but the interview with Sally Light was. As they set off on the ride the cameraman panned round the crowd and Dave and myself were included in the film. We enjoyed the hour we spent there.

Concert -  Friday May 15th 2015

Kate Inchley

The concert was a great success, entertainment by Wollaston Theatrical Singers and Andy Clarke guitarist was enthusiastically accepted by all who came. The singers sang a selection of songs including The Rhythm of Life, California Dreaming, One More Day, medleys from The Lion King, Wicked, SisterAct, and a father and son duet Me and My Shadow.

 

Andy played a selection of guitar solos from the Shadows repertoire, a couple of arrangements he had done himself and finished his spot with some Johnnie Cash numbers which he sang to. We had a very good raffle raised £152, and £375 was the total for the evening. The Windmill Club in Rushden proved a very good venue for this event the staff were extremely helpful and with the bar being available a very good evening was had by all.

 

 

Spring Fair - Monday 4th May 2015

by Derrick Peasland

St Marks Church Kingsthorpe Northampton organised a Spring Fair and, beside their own stalls, provided space for car booters and tables for hire. I contacted Jackie and David Atkins to see if they had sufficient stock and it was decided we could manage Tombola and Bric-a-brac so I booked two tables. Margaret Batchelor also offered to help.

The day arrived and the sun was shining brightly, much to my relief, as we were outside in the open air. Which apparently I had forgotten to tell Jackie and Dave. We would have been able to go inside, in the church, if it had rained, but it proved unnecessary. Maureen Sanders came along with quite an amount of items for sale so we hired another table.

 

We were kept quite busy during the morning, occasionally fortified with cups of coffee and the odd bacon butty, right up to 12.00pm. We finished with the sum of £125.10 in the kitty much to Jackie's delight. I also managed to collect a few more signatures to the Charter, so a morning well spent.

 

My thanks to Jackie and David, Margaret and Maureen.

 

 

AGM April 12th 2015.

25 people attended the recent AGM of Northants Branch MND Association.

 

The chair welcomed members and quests and apologies were received. Minutes of the previous AGM were discussed, agreed and signed. The chair reported on a busy and profitable year with many events throughout the year April 2014 --- April 2015.

 

Our usual fundraisers again supporting us with golf days, a quiz night , music evenings, a concert, bake-it days and coffee mornings. We attended a couple of Medical Matters Awareness Days.and attended the Association AGM and Conference in September.

 

Highlights of the year were the film of Stephen Hawking and his first wife Jane, their love and the battle with MND ,Professor Hawking is a Patron of the Association. We had collections at 2 cinemas whilst the film was being shown, raising £444.19 for the branch. A charity "Walk for a Cause" presented the branch with a cheque £1.000. The Ice Bucket Challenge went global raising over £7 million for the Association and over $100 million in U.S.A. Our Charter Campaign finishes at midnight May 6th, all collected names will be presented at Downing Street in a hope to get better services for people with MND. The Chair expressed our grateful thanks to all who help and support us throughout the year.

 

The treasurer presented his report with a healthy balance at the year end the report was agreed and adopted. Election of officers came next with Chair, Treasurer,Vice Chair staying the same, and with the secretary standing down a new secretary was nominated, proposed, seconded and agreed. The committee remains the same.

 

Rob Nixon received his 10 year long service award from Neil Penson our V.D.C. Kate presented some flowers to Walt Loweth and Shirley Botterill, Walt and Shirley make sure the hall is open for us and stay and lock up afterwards for our open meetings, this is really appreciated.

Our guest speaker was Donna Young the Regional Fundraiser for Northants. It was the first time Donna had visited us as she was new to our area, she spoke of her role as a fundraiser and offered her help with any events we were planning.

 

The afternoon finished with tea, cakes and chat.