MND Association. Norfolk, Norwich and Waveney Branch
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News 2018

 

FIGHTBACK

The branch publishes Fightback, our newsletter, three times a year. Its contents include reports of recent events, notice of future events in aid of the MND Association, a thank those who have raised or contributed funds for the work of the branch and news from National Office.

 

 

Saturday 22 September Wolves v Manchester United

Martin Burnell
Denis, Edith and Martin

On hearing that Martin Burnell was a lifelong Manchester United Supporter, Lindsay, our Regional Care Development Adviser, had a quiet word with her cousin (with his agreement of course).

 

Debbie Goward, a Senior Executive at DHL GB, arranged for Martin and his mother, Edith, to watch the game from DHL's private box at Old Trafford.

 

An MND Association Quality of Life grant, applied for by his Association Visitor through National Office, allowed the Branch to help fund his travel and hotel.

 

Martin and his mother had a great time, even though the match ended in a draw! Martin was presented with a signed shirt, the first that Debbie has ever been able to arrange.

 

He also had the opportunity to meet ex-players, including Denis Irwin, who appears with them in the pitch side photos. (DHL kindly supplied photographs and, with Denis's permission, agreed that we could use them in our newsletter and on our website).

 

 

 

Friday 21 September 2018 Jonathan’s London City Swim

Jonathan
Jonathan
Jonathan

After the cancellation of the Amsterdam City Swim two weeks earlier, Jonathan King was determined to swim 2,000 meters. However, due to very windy conditions the organisers decided to shorten the course. But there was no stopping Jonathan ... he completed all 4 waves at the London City Swim not just once but twice!!!! Swimming a total of 1,600 meters. He swam in memory of Frank Gillett and raised a fantastic £500. We are very grateful to Jonathan, and to Lucie Gillett who sent in the article and pictures.

 

London City Swim is a charity swim that brings together hundreds of swimmers who wish to make a difference by swimming to raise awareness of motor neurone disease. All event costs are covered by the sponsors Intertrust and Barrows. Every penny of the money raised this year will go to Project AMBRoSIA (A Multicentre Biomarker Resource Strategy in ALS). The five year research project has been set up to search for biomarkers of MND. It is led by Prof Martin Turner (Oxford), Dr Andrea Malaspina (London) and Prof Dame Pamela Shaw (Sheffield).

 

Friday 7 September 2018 Bungay and Waveney Valley Golf Club Captain's Charity Day

Steve Rowe

Steve Rowe held his Captain's Charity Day in aid of the MND Association at Bungay and Waveney Valley Golf Club. One hundred and four people took park in a golfing day with some twists thrown in, a hockey, football, rugby and cricket assists on designated holes. A fantastic day was enjoyed by all with a fabulous meal to follow.

 

A raffle, auction and donations raised £6,385.67, three signed Norwich shirts were auctioned off along with a variety of golf vouchers donated by many golf clubs. We would like to join Steve in taking this opportunity to thank the many local businesses for their generosity providing raffle prizes, the lovely members who gave up their time to help on the day and all those who attended for giving generously to reach a fantastic amount of money.

 

The photo shows Steve Rowe (Men’s Captain), Belinda Rowe (daughter of the late John Francis), Dan Andersen, Rob Andersen and Chris Andersen (John’s grandsons).

 

Steve said, “This association is very close to our heart, supporting us as a family whilst my wife’s father, John Francis, lived with this devastating disease. John attended many meetings with my wife always looking forward to them, seeing friends and getting advice when necessary.”

 

Thursday – Saturday 23-25 August 2018 Tesco Bucket Collection

We are grateful to Tesco, Sheringham, who hosted a collection for our Branch of the MND Association. Their Grocery Manager, Jonathan King, who has been involved in the MND Association Sponsored Swims in the London Docks in both 2017 and 2018, suggested the collection in this store. It was just the right time of year when families and holidaymakers boost the number of shoppers and we had a fabulous result of £848.48. Thank you to Anne Gillett, who organised the rotas and collected each day. Our thanks also go to all those who gave so generously of their time to help and, of course, to all those who donated.

 

Friday 10 - Sunday 12 August The Great Yarmouth Scooter Rally 2018 hosted by The Sidewinders Scooter Club

The Scooter Club featured Gavin Casey on this year's rally patch showing club member Gavin riding his scooter a few years ago – before his diagnosis of motor neurone disease. The patch also bears the MND Association logo as this year people were able to donate to the Association over the rally weekend via the raffle and on the stall. The Club also supported the local dogs home who supply water to the rally.

 

It was a really great weekend, and we would like to thank everyone who helped in the organisation over the months leading up to the event and on the day. Particular thanks go to Gavin and wife Louise, and to Angelina James and Michelle Prendergast. Money was raised through a raffle and donations. In addition there was a family stall selling sweets and soaps (pictured), run by Angelina and Michelle with help from the children, and money from a collection at the local shop, Longbeach Store. Gavin and Louise were able to give Malcolm Chubbock, our Chairman, the grand total of £530.80 for Branch funds.

 

This is not the first time that Gavin and Louise have raised money for the branch. In July 2018, they gave a total of £1,033.56. The money came from a 'Bake it' event which raised £270, a Super League darts collection of £149.28, a dB Drag Car Show collection of £141.28 and a Gung-ho inflatable 5k fun-run which raised £478. They are not stopping yet! By the time you read this son-in-law Tyler James will have completed the Paras' 10 in Catterick, North Yorkshire on 16 September for the MND Association. Andrew Brooke, a friend, is being sponsored for going sober during October and November and has already raised £50. Louise is also planning a 'Bake it' event in October.

 

July 2018 - Three Half Marathons in Three Weeks!

Bethany Casasbuenas (née Chubbock) decided to mark 21 years since the death of her father John to motor neurone disease by running three half marathons in three weeks to raise money for the MND Association. Bethany and her husband Juan ran the Richmond half marathon on 1 July, the Serpent Trial half marathon in the New Forest on 7 July and the Down Tow Up Flow half marathon in Windsor on 22 July.

 

Bethany set a target of £500. The total raised as of 3August was £2,155 which rises to £2,475 when gift aid is included – a massive 430% of her target. She asked for the money raised to be transferred to the Norfolk, Norwich and Waveney Branch of the MND Association for local use. We are very grateful to them both – particularly given the intense heat this July! If you would like to increase the total raised you can visit Bethany's Virgin Money Giving page to make a donation.

Marathon 1
Marathon 2

The photos show Bethany and Juan after the first and third of the three half marathons.

 

Saturday 21 July 2018 Glebe Cottage Open Garden

We are very grateful to Frank and Diana Eliel for opening their gardens in support of the Norfolk, Norwich and Waveney Branch of the MND Association, and for inviting so many of their friends to help make it such a successful event.

 

Despite the hot dry weather the two acres of garden looked good on the day. In addition to a huge vegetable plot, fruit trees, perennials and annuals they have a massive Wellingtonia, one of the few to be found in Norfolk, brought back by the plant collector William Lobb sometime in the nineteenth century. I think everyone was impressed by the care and attention that it must take to keep the garden looking so good – the butterflies seemed to appreciate the effort too, Sue spotted at least six species during the afternoon.

 

The branch set up an information stall and had MND Association merchandise for sale in the shade of the open cart shed. Sale of merchandise raised £62. Malcolm and Sue took turns with Trish and Jill to man the stall, and were grateful to their hosts for cold drinks and mugs of tea. We enjoyed meeting new people and chatting to other members of the Branch who came to lend their support.

Glebe Cottage
Glebe Cottage
Glebe Cottage

The day was chosen to coincide with the flower festival at the beautiful Woodbastwick Church. This had the added benefit that refreshments were available on the village green to raise money for the Church.

 

Entry to the garden was free, but people were asked to consider a donation. In addition garden produce and some textile products were on sale so that by the end of the day Frank and Diana had raised a very pleasing £434.

 

21 June Global MND Awareness Day

Every year, MND Associations across the globe mark 21 June as a special day for raising awareness and highlighting the impact that MND has on people. In the Northern Hemisphere, the 21 June also marks the summer solstice - seen as a turning point in the year, the start of a new season of hope.

 

The day also saw the launch of a video which reflects how MND affects people in different ways. It illustrated how by working together we can reach our ultimate goal of a world free from MND. The video includes examples of how the Association, its volunteers and supporters, have been able to make a difference. The focus on research at the end of the video reminds us that there is hope for the future.

 

Norwich City Hall was lit in blue and orange, the colours of the MND Association, from 5pm. Once again we appreciate the support of Chief Executive, Laura McGillivray, and the Culture and Events Officer at Norwich City Council who made it happen. Members of the Branch Committee and supporters were joined on the steps of City Hall by Lord Mayor of Norwich Martin Schmierer and members of the city council, including deputy leader Gail Harris, Liberal Democrat group leader James Wright and Labour councillors Julie Brociek-Coulton and Jacob Huntley. The Lord Mayor gave a brief and very fitting address before handing over to Sue to say a few words about our current campaigns. It was particularly encouraging that so many councillors who were unable to join us on the night wrote messages of support.

Global Awareness Day
Photo taken outside Norwich City Hall on Thursday 21 June. Back row from left to right Cllr James Wright, the Lord Mayor of Norwich, Cllr Julie Brociek-Coulton, Cllr Gail Harris Deputy Leader of Norwich City Council, Cllr Jacob Huntley. Front row Sue Heal, Judy Burns-Thomson, Malcolm Chubbock, Anne Gillett, a Supporter.
Global Awareness Day
Global MND Awareness Day - Norwich City Hall lit in blue and orange.

Report in the Eastern Daily Press here

 

Thursday 21 June 2018 Global MND Awareness Day at Queens Road Sainsbury's

Tracey Snelling

Thank you to Sainsbury’s who allowed employeeTracey Snelling to dress in blue and orange - the MND Association colours - to raise awareness of motor neurone disease.

 

The collection on her till raised £160, thank you to everyone who contributed.

 

Tracey also held a Bake-it event in the staff canteen – her husband, a chef, baked the brownies. We are very grateful to them both. Last year Tracey raised £675 during her Silence Speaks event when she helped draw attention to the difficulties faced by many diagnosed with MND, including the association’s late patron Prof Stephen Hawking, who lose their ability to speak.

 

On 21 June, Tracey was happy to speak with people about motor neurone disease and to give out literature.

 

Sunday 17 June 2018 Ditchingham Estate Open Gardens

We are very grateful to Earl Ferrers for allowing the gardens to be opened to raise money in support of the Norfolk, Norwich and Waveney Branch of the MND Association. The gardens looked beautiful on the day, it was hard to believe that they are maintained by just one gardener - Ian Hart. We would also like to thank Judith Bamber and Jane Wicksted, and their many helpers for all their work both planning the event and on the day. Thanks are also due to Mr Hilary Manuhwa who donated one of his hippos that he made from Zimbabwean Soapstone for the raffle which raised £342, and to everyone who gave prizes for the Tombola.

 

There was a wonderful array of cakes for purchase and our thanks go to everyone who baked for us. Tea, coffee and cakes were available for purchase. We are grateful to Sainsbury’s Queens Road for providing tea, coffee and sugar. A number of stall holders attended, and have agreed to donate a percentage of their takings to the Branch.

 

The final amount raised has yet to be announced, but the initial count on the day put the total near £4,000 - a stunning result.

 

Monday 4 June 2018 An Evening with Bounder and Cad

A remarkable evening in aid of the local Norfolk, Norwich and Waveney Branch of the MND Association was held on Monday 4th June 2018. Jane and Mike Wickstead kindly gave the use of their marquee after their daughter’s wedding in Woodton.

 

The evening commenced with a sparkling wine and canape reception for 180 guests. This was followed by the first half of a performance by Bounder and Cad. The resulting three encores at the end spoke for itself!

 

The committee, Pat Amey, Paris Back, Janey Chadd, Jules Savory and Jane Wickstead were delighted by how the evening went. Judy Burns-Thomson from the local branch, spoke movingly about the sometimes insurmountable and devastating challenges faced for patients and families with MND . Mr David Dick, consultant Neurologist at Norfolk and Norwich University Hospital attended the event. Thanks to our sponsors, the generosity of guests with the Raffle and Auction and friends who donated prior to the event, over £28,000 was raised.

 

Cheffins Sponsored Bounder and Cad and Luke Macdonald of Cheffins was at the helm for the Auction. With his witty delivery and dynamism, £8970 was raised with some outstanding Lots on Offer.

 

Barclays matched our Raffle up to £1,000 and this upped the total to £2,800 as a result.

 

Leathes Prior Solicitors and Majestic Wines also generously sponsored the evening.

 

Article supplied by Paris Back.

The Branch would like to add our thanks to the committee for all their hard work behind the scenes, and congratulate them on raising such a fantastic sum! We are all very grateful for the generosity shown by everyone involved.

 

http://www.edp24.co.uk/news/mnd-association-norfolk-norwich-waveney-fundraiser-1-5558639

 

 

Thursday 31 May – Saturday 2 June 2018 Queens Road Sainsbury's bucket collection

Thank you to everyone who helped with the final bucket collection at Sainsbury's during our year as Local Charity Partner of the year. Again we had a large team of collectors so that for most of the time we were able to have someone standing at both entrances. As on previous occasions we were happy to raise awareness of motor neurone disease and have some good conversations, many with people who had seen at first hand the effects of MND on a family member or friend.

 

Thank you to all the customers who contributed helping us raise £1,098.80. Special thanks are also due to Tracy Galer and Helen Morris who liaised with us throughout the year.

 

Sunday 27 May 2018 Edinburgh Marathon

Phillip Laurier

 

Phillip Laurier ran the Edinburgh Marathon in 5 hours 51 minutes and 10 seconds.

 

He raised £250 for the Norfolk, Norwich and Waveney Branch.

 

He is pictured here presenting a cheque to Jennifer Palmer, a new committee member, at our Open Meeting at Upton on 24 June.

 

Thursday 3 May 2018 Charity Walk

Charity Walk
Charity Walk

 Paul Ablett and Dale Sankey set off from Cromer Pier on 3 May to walk to Chinnys Sports Club, Halesworth where they planned to arrive at 12:30pm on 6 May. The walk was in memory of Mitch Block, who died of motor neurone disease.

 

Some photographs were taken at the start of the walk by Malcolm Chubbock, Chairman and roving reporter - and again at the end back at Chinnys. Paul Ablett is shown in the centre of the first photograph. Dean Boast, also pictured, drove the back-up car. The idea was that if either of the walkers had to drop out he could take over so that there would always be two people walking.

 

The walkers arrived safely in Halesworth on Sunday. Paul walked all the way, Dean took over from Dale when the blisters became too much.

 

Their walk covered approximately 70 miles - we are very grateful to them for their endurance and efforts in support of people living with motor neurone disease. The walk raised a splendid £2,255 which was donated to the Branch - we thank Paul, Dale and Dean for their endurance!

 

Sunday 15 April 2018 Snap Action was back!

Thank you to everyone who took part in our action celebrating International micro-volunteering day. A message on our branch Facebook page and twitter account asked people to share the 'What is MND?' animation, which can be found here. Together supporters across the country reached 127,280 people online.

 

Thursday to Saturday 12 – 14 April 2018 Queens Road Sainsbury's Bucket Collection

Thank you to everyone who held a bucket – we had a team of 20 collectors so that for most of the time we were able to have someone standing at both entrances. Once again it was good to raise awareness and to engage in conversation – often with people who had seen at first hand the effects of motor neurone disease on a family member or friend.

 

Thank you to the staff at Sainsbury’s who made the collection possible, and to all the customers who supported us in raising £594.35.

 

18 April 2018 release in Paperback of Running Wild: Two horses, friends until separated by an enemy find the way back to each others company

Lilia Chippendale was aged 10 when she wrote this short book with her creative writing club at school. It is now available on Amazon, the royalties from each book (about £1) will be donated to the MND Association. Lilia's Grandfather is living with MND in Norfolk - she would love people to buy her book (and so would we).

 

8 April 2018 Branch AGM

AGM 2018
AGM 2018

The annual general meeting was held at St Andrew's Church Hall on Sunday 8 April. It was well attended and everyone seemed to enjoy themselves.

 

Following the formal part of the meeting there was a hot lunch.

 

We were very fortunate to have two splendid talks:

 

Dr Dick, Consultant Neurologist and Co-Director of the Norfolk MND Care and Research Network gave us a brief update on the work of the Network.

 

Chris James, Director of External Affairs at the Motor Neurone Disease Association spoke about the range of work that is carried out on our behalf. You can watch his power point presentation - What External Affairs Do.

With thanks to Daniel Barnes for taking the photos.

 

The event was paid for using part of a grant of £1,000 from the Community Cash 2017 Fund. Thank you to everyone who provided feedback and/or case studies reflecting their appreciation of our open meetings.

 

14 March 2018 Sad news of Stephen Hawking’s death.

The MND Association is saddened to learn of the death of Professor Stephen Hawking, Patron since 2008. Our thoughts are with Professor Hawking’s family. Throughout his inspirational life Professor Hawking played a vital role in raising awareness of motor neurone disease around the world.

 

More details about his life are available at https://www.mndassociation.org/news-and-events/latest-news/sad-news-of-stephen-hawkings-death/

 

8 March 2018 Diss Golf Club Presentation

Mike Doig

Malcolm Chubbock, our branch chairman, was invited to attend a cheque presentation at Diss Golf Club on Thursday 8 March. He is pictured here receiving a cheque for £1,900.45 from Mike Doig, Club Captain for 2017; a splendid amount which will be used to help support people living with motor neurone disease. Malcolm appreciated the kind hospitality shown to him on the night, and the opportunity to speak with people who had known his brother John, who died of motor neurone disease in 1997.

 

During his year as Club Captain, Mike chose the Norfolk, Norwich and Waveney Branch of the MND Association as his Charity of the Year. We are very grateful to Mike for his support. He sent his best wishes “for all the great work you (Malcolm) and other volunteers are doing to help those suffering under the scourge of MND and their relatives”.

 

A number of fund-raising events were held during the year including golf ball raffles at most of the home matches that Diss Golf Club played against a range of golf clubs in Norfolk and Suffolk. There were larger charity raffles at their Seniors Open in May 2017 (which welcomed 90 participants from around East Anglia), and at Mike's Seniors Captain's Charity Invitation Day in August 2017 (which attracted participants from Norfolk and Suffolk). A raffle of a Luke Donald Signature putter within the club raised over £400. Charity donations were received from club members at their various designated charity competitions during the year. We would like to thank everyone involved.

 

26 February 2018 Ann and Barrie - a documentary by Daniel Barnes

The Branch was delighted to learn that Daniel's film is now on the MND Association's supporters YouTube page, link below. It is a very moving documentary put together with great sensitivity by Daniel as a university project. As you watch you will appreciate his special insight into life with motor neurone disease. Some of you will recognise Ann and Barrie who kindly opened their home and gave their time to raise awareness of motor neurone disease. https://youtu.be/MoG2iKS_Vgo

 

31 January Launch of the Norfolk MND Care and Research Network, in the presence of the Royal Patron of the Motor Neurone Disease Association, HRH The Princess Royal

Around 80 guests attended an event at the Norfolk and Norwich University Hospital. Guests included MND Association volunteers and funders, local councillors and dignitaries, nurses, therapists, researchers, fundraising supporters, senior hospital staff – and most importantly people in our area living with motor neurone disease and family members.

 

HRH The Princess Royal spent time speaking with everyone who attended; we were all impressed by the time and attention that she gave to each of us as she listened to what we had to say. The reception was followed by a series of speeches in the Benjamin Gooch Theatre. Sally Light spoke first giving a brief description of motor neurone disease, and saying a little about the history that led to the launch of the 21st MND Care Network. She highlighted the role of Dr Dick, one of the co-directors of the new Network, who spent 16 years working to bring a Care Network to Norfolk, and the importance of the money raised by Credit Suisse which has helped fund the Network. Credit Suisse adopted the MND Association as their UK Charity of the Year Partner 2017 after one of their Project Managers was diagnosed with MND in 2015, and raised a staggering £740,000 for the Association. Sally then introduced Dr Richard Kell, a GP from Halesworth, who has now retired following his diagnosis with motor neurone disease.

 

Dr Kell gave a very moving speech in which he shared how he recognised his symptoms having met five or six people living with MND during his career. He explained how his hoarse voice had developed a slurred characteristic, which could easily be mistaken for the effects of having imbibed rather more alcohol than was good for him, and described how his emotional lability meant that he cried easily if told something sad. In addition to his work as a GP he was chairman of Halesworth Community Nursing Care Fund, which has already raised £700,000 to build a new support centre in Halesworth to provide help for people who have been diagnosed with life-limiting illnesses. He noted the irony that he might be one of the people to benefit when the facility is built!

 

HRH The Princess Royal then gave a speech that demonstrated her intimate knowledge of the work of the MND Association, and of the challenges faced in a rural county which she knows well! After a splendid speech that had many of us smiling – particularly when she quipped that it is often said that Doctors make the worst patients – she unveiled the plaque marking the formal opening of the Norfolk MND Care and Research Network. Mark Davies, Chief Executive of NNUH, gave a short speech welcoming the opening of the new venture before inviting HRH The Princess Royal to sign the visitors book. She commented that there did not seem to have been too many visitors since her mother officially opened the hospital in February 2004! Whilst The Princess Royal left to attend another engagement the guests were invited to enjoy a buffet lunch.

 

We are very grateful to Dr Dick, Helen Copsey, Lindsay Goward and the VIP team at the MND Association for all their hard work organising such a wonderful event.

 

Background: The Norfolk MND Care and Research Network serves the populations of Norwich, Norfolk and Waveney Valley, and is based out of three hospitals: the Norfolk and Norwich University Hospital in Norwich, the James Paget Hospital in Great Yarmouth and The Queen Elizabeth Hospital in King's Lynn. Staff overcome the geographic dispersal of people living with motor neurone disease in the region by rotating between the three centres, taking their expertise direct to people living with MND as much as possible. On 24 January the first new MND clinic was launched at Cromer, and on 25 January the second satellite MND clinic was launched at Beccles hospital. The network takes the expertise of the specialist staff direct to people living with MND.

 

Thank you to Hugh Thompson for taking the photos and to the VIP team for making them available.

 

iceniPost article here.    Eastern Daily Press article here.