Norfolk, Norwich and Waveney Branch



News 2019



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.


Mandy and Nigel

Friday 6 – Sunday 8 December Christmas Tree Festival

St Andrew’s Church, Gorleston, Christmas Tree Festival featured fifty-five beautifully decorated trees, which together raised £1,276.17 for a wide variety of charities and good causes.


Pictured is the stunning tree that Mandy and Nigel Allen decorated in blue and orange, the Association colours, to raise awareness of motor neurone disease and to raise money for the Branch.


Thank you to Mandy and Nigel for all their fundraising this year, and to Lisa for providing the photo.


30th Marsh Christmas Charity Car Park November – December 2019

Thank you to everyone who used Marsh’s car park in Norwich during the weekends between 23 November and 22 December and donated a minimum of £4 to park all day.


We would like to thank all the staff who volunteered their time to act as marshals, and who made the Branch members who were able to help very welcome.


Saturday 23 November 2019 – Christmas Fayre

Christmas Fayre

Thanks to Pat Goose and her helpers, pictured from left to right Elsie Cletheroe, Sheila Read, Pat Goose and Carol Wiles, this year saw another thoroughly enjoyable fayre at Jays Green Hall in Harleston.


There was a lucky dip, tombola, two raffles including one for a Marks and Spencer hamper.


There was home-made produce, cards, jewellery, Christmas decorations, sweets and chocolates, presents, candles and cake for sale. Refreshments were served. Balloon art and face painting kept the children happy, as did the visit from Father Christmas!


Judy attended on behalf of the Branch and was impressed by all the work that had gone into making it such a happy day. The event raised a splendid £460. Thank you to everyone who contributed to making the day such a success.

Lisa wilson

Sunday 17 November 2019 – Quiz Night

Lisa Wilson runs with Waveney Valley Athletic Club.


They hosted a quiz night on 17 November and held a raffle.


The proceeds of the raffle came to a stunning £360 and were donated to the Branch in memory of Lisa’s husband, Steve.


We are very grateful to everyone who participated on the night and to Lisa for presenting the cheque to Judy Burns-Thomson.








Open Meeting at Wortwell Sunday 17 November 2019

The meeting held at Wortwell Community Centre began at 12 noon. Committee members arrived at 11am to put the heating on, set up the tables and lay out the merchandise and information board. Kelda's Kitchen was already there to make welcome mugs of tea and coffee as people arrived. There was plenty of opportunity to meet friends old and new and to socialise before a Christmas lunch was served at 1pm. The food was excellent thanks to our caterers!


Christmas cards and other merchandise proved very popular with sales totalling £435.60, beating last year's record total of £373.75. Thank you to everyone who supported us.


We were very pleased that once again Helen Copsey, MND Coordinator, and Emma Larner, Respiratory Physiotherapist, were able to join us.


After lunch Kirsten Kelly PhD, Research Programmes and Partnerships Manager, gave us an interesting talk on research into motor neurone disease. After a brief historical overview she moved onto the present and into the future, covering a lot of ground in less than 45 minutes. Kirsten stayed on after her talk to answer questions raised by individuals.


Kirsten has kindly shared the power point presentation that she used to structure her talk which can be accessed here. We are very grateful to her for allowing us to video her talk. Sadly Sue's camera chip had filled before the talk ended so there is a short break in the flow before Jo's phone took over! We hope that those who were unable to stay for the talk or to attend on the day will enjoy hearing Kirsten as much as we did.



The raffle table was full with thirty splendid prizes and raised £164 that can be set against the cost of the catering and hire of the hall.


As usual our photography signs were displayed around the hall and we hope that people will be happy to see a few snaps taken at the tables. Of course, if anyone changes their mind and would rather not see their photo on display please contact who will arrange to remove them!


Malcolm read from the Association's General Election Manifesto for 2019, and Sue encouraged everyone to check our Facebook and/or Twitter feed to see the link to our general election campaign launch early in the week. She asked if everyone would tweet or email their MPs.


Our aim is to have as many MPs in the new Parliament supportive of our Scrap6Months campaign as possible. We are asking you to contact your local parliamentary candidates and ask them to pledge to support Scrap6Months if they are elected. Please do take our online actions, and if your candidates call or hold hustings events please engage them in conversation and provide them with a copy of our manifesto.


It is important that you remain impartial on social media and don't share political tweets from an account that is linked to the MND Association!


October 2019 Waitrose & Partners Norwich (Eaton)

Following an application earlier in the year, the Norfolk, Norwich and Waveney Branch of the MND Association were selected by Waitrose & Partners Norwich (Eaton) to be supported through their Community Matters green token scheme during October 2019.



Sue was happy to receive a cheque, in December, made payable to the Branch for £418 from Waitrose Partner Emma Taylor on behalf of Waitrose & Partners Norwich.


In return Sue presented the Branch with two certificates recognising their contribution. This is an excellent result and we are very grateful to everyone who put green tokens in the box in support of the Branch.


We will put the money towards the Open Meeting and AGM at Eaton St Andrews on 19 April.


It will help towards meeting the costs of hiring the venue and providing lunch, it can also be used towards transport costs for people living with motor neurone disease where needed.




Friday 11 October and Saturday 12 October fundraising in memory of Steve Wilson

steve Wilson

A two day event was held in Lowestoft by Lisa Wilson for the Motor Neurone Disease Association in memory of her husband, Stephen Wilson, who sadly passed away in July following a short battle with MND.


Friday 11th October involved a street collection in Lowestoft Town Centre along with the general public trying their luck punching or kicking punch bags at Ruckus Gym.


Saturday 12th October at Lowestoft Town Football Club, whilst a Craft Fayre was held, a friend also raised money by having her long hair cut and then shaved off. The waist long hair was donated to the Little Princess Trust to be made into real hair wigs for children and young people. Saturday night saw family and friends gather to pay their respects to Steve with a raffle being held along with a memory tree for messages to be left in respect of him. Local MP, Peter Aldous, attended Steve's Celebration of Life Event and is pictured here with Lisa.


Over the course of the 2 day event £ 1,360.25 was raised for the Motor Neurone Disease Association. Our thanks to everyone who supported Lisa's fundraising events helping her raise such a splendid amount, and especially to Lisa for her work before and during the two days.



Sunday 6 October 2019 Marking 40 years improving care and support for people with MND


On Sunday 6 October, three intrepid members of the Norfolk, Norwich and Waveney Branch braved the rain and floods on Sunday evening to take some photos in front of City Hall, but they weren't great!


Whilst considering what to do we reflected on how far the Association has come since the inaugural meeting on 6 October 1979, and remembered those who had lost their lives to motor neurone disease.


On that day forty years ago a group of volunteers met together to see what they could do to help others affected by MND.


On Monday, they tried again when City Hall was, for a short while, lit in blue and orange, the colours of the MND Association. The weather was a little better; Lisa and Malcolm held the Branch banner for a photo!









We look forward to seeing City Hall illuminated again on Global MND Awareness Day 21 June 2020 looking as wonderful as in the photo taken by Cllr James Wright this June - on a warm dry day!


Sally Light, Chief Executive at the MND Association, said: “It is essential that we raise awareness of MND so people understand what a devastating disease it is.

Together we can make a real difference for people affected by MND and we are grateful for the amazing support of people in the local branches and support groups”.


The Motor Neurone Disease Association is the only national charity in England, Wales and Northern Ireland focused on MND care, research and campaigning.


You can read about the ways in which the Association raised awareness in our 40th year here




Thank you to Lisa for providing photographs taken in London, on 4 October, after visiting the Art exhibition held to mark the 40th year at the gallery@oxo on London's South Bank between 2 and 6 October.


The first one, showing Lily James was on display in Leicester Square at Vue Cinema and the second one was on the Southbank near the Oxo Wharf.











September 2019 Jean's Coast to Coast Walk

Malcolm and Jean

Over the course of two weeks, Jean walked 190 miles from St. Bees Head on the west coast to Robin Hood's Bay on the east coast.


Her route took her through the hills of the Lake District, across the Yorkshire Dales and the North York Moors National Park – a tough walk


Jean sought sponsorship online and offline to raise funds for the Norfolk, Norwich and Waveney Branch of the MND Association. You can read Jean's story and donate on her JustGiving page.


We were delighted when Jean joined us at our Notcutts coffee morning on 20 November. She is pictured presenting a cheque for £565 to Malcolm, our branch chairman.


This figure will be boosted by gift aid. Online giving had already reached £420, raising the total to over £1,000.


Jean, thank you! Ours thanks also go to those donated so generously to help fund our work supporting people living with motor neurone disease.





Saturday 28 September 2019 Make it Count! 2 – Punks raising cash for the MND Association

Punk Rock

A punk rock concert was held on 28 September from 2pm until midnight at the Moles Rest, Fifers Lane, Norwich. It featured ten punk rock bands from all over the UK including local Norwich band Motorneuronz featuring front man and lead vocalist Paul Wharton.


Entry was by donations at the door. Merchandise was also on sale. The total raised to date is £1,300.


Paul returned to Norwich after his diagnosis and formed the band with three of his old school friends. He says he will carry on doing gigs for as long as he is able.


The photo shows Paul together with Malcolm Chubbock, Branch Chair - despite the date stamp on the photo it was actually taken at the event on 28 September!


Pre-event publicity was provided by the EDP



Sunday 22 September 2019 – Lisa Wilson completed The Great East Half Marathon

Lisa took part in the Great East Half Marathon running 13.1 miles in Ipswich.


She wrote, “I had entered this race ages ago but following being stuck in Greece and Steve losing his battle with MND my training had suffered and I hadn't ran much since June. However, I completed it in 2:16:58 and was only 16 minutes slower than my previous half marathon time and have raised £245 in two weeks since getting my sponsorship forms and running the race.”


Thank you!


Lisa is now involved in organising a series of events for 11 & 12 October, which are described on our Forthcoming events page.









Charity Golden Bond places for the Great North Run on 13 September 2020

....are now available. The Great North Run is the Association's second biggest annual fundraiser. There are 10 places on offer to Branches and Groups which will be filled on a first come first served basis.


The supporter needs to register with Stephanie Stewart rather than do this online – this is to make sure the Branch is invoiced. Stephanie is the Senior Events Fundraiser at the MND Association, 10-15 Notre Dame Mews, Northampton, NN1 2BG and can be contacted by telephone on 01604 611761 or by email at  The cost to the supporter is £20 registration fee (rising to £35 after the early bird discount ends on 1 January). In addition the Branch is invoiced for the cost of the place at £55, thus the sponsorship needs to cover the costs and hopefully raise a significant additional sum to come directly to the Branch. If you are interested it is important to register quickly – the ten places will not last long!


In addition it would be very helpful if you could contact us so we know who is applying before we receive the invoice! Many thanks.


Saturday 31 August 2019 Team Allen's Charity Fundraiser

It was a brilliant day, though it might better be described as a brilliant week, as Team Allen went out in fancy dress to hand out leaflets. The EDP provided some welcome publicity ahead of the event, which you can read here. Their sale of shoes and clothing for men, ladies, children and babies clothing, both new and pre-loved, were on sale at the Methodist Church in Gorleston. Individual items, including toys, were priced at £3 or less. We heard they had a lot of merchandise, but to raise £5,695 in on the day is staggering! All the items were donated, refreshments were available on the day and the funds raised were for the benefit of the Norfolk Norwich and Waveney Branch. Thank you Team Allen!

Nigel and Mandy are also planning a Christmas fundraiser on 6 December, more details will appear on our Facebook page and website later.

Sunday 18 August 2019 Ann's Tour de Broads

Tour de Broads
Tour de Broads

Ann wrote, 'My husband Barrie, son Max and friend Martin rode the Tour de Broads on Sunday 18th fundraising for the Norwich and Waveney Branch of MNDA. The start at Whitlingham Country Park was warm and sunny, then uphill from Norwich. There were quiet roads until the traffic at Wroxham needed careful negotiation. The first coffee and cake stop after 20 miles was at Hoveton. Rain and wind then slowed them up until they had a break and met Ann and Maggie for more cake and coffee at Ferry Inn Stokesby at 35 miles. There was a headwind back to Norwich for a satisfying downhill cruise to finish at Whitlingham again. The total should have been 50 miles but was actually was 57 miles! They weren't surprised as when they did it in 2015, it was 57 miles! Great day, and no punctures! Warmest thanks to all who donated, over £700 so far.'


We are very grateful to Barrie, Max and Martin for raising funds for the Branch, this is not the first time that they have cycled to raise money for the branch; that is a long way to cycle in one day! If you would like to contribute to this good cause and add to their total online please visit


Sunday 18 August 2019 – Karen Ellis climbed Mount Snowdon

Karen took on the challenge of climbing Mount Snowdon after her Dad was diagnosed with MND in October 2018. We are delighted that she decided to raise money for the MND Association, which will be shared equally between the local Branch and National Office who together provide support for people living with MND.


The initial plan to climb in June had to be postponed after her husband fractured his ankle just days before they set off. Despite Karen's fear of heights, which would have deterred many of us from going ahead, they set a new date and climbed Snowdon on Sunday 18 August.


Two days later Karen sent me an email with some photos showing some beautiful scenery – and scary paths and drops! She wrote, “I’m home recovering from Snowdon with very stiff legs”. She went on to describe the events of the day. “We walked up via the Pyg Track. If I’d have known prior how scary a couple of the scrambles are, I don’t think I’d have done it. Within 20 minutes of starting at 8:20am, I could see people climbing round a steep corner a good 100feet high, up to the right. I said to Rich at that point that if that’s the way we had to go I wouldn’t be able to do it. I said I couldn’t do it quite a few times!


It was getting colder and really windy as we went up, we couldn’t see the summit as it was very dark and foggy up there. We saw two wardens when we were about two thirds of the way, who told us that winds at the summit were 40mph. They advised not climbing up to the brass plaque at the summit due to the wind. I could see that the last corner and scramble up ahead was very steep with quite a drop. Once we arrived there I tried once to climb up but it was very jagged and about 3 feet wide, I was so scared I started crying and said there’s no way I could do it. At the same time, I couldn’t face going back the way we’d came either. I let quite a few people past and tried again, I think it must be the scariest thing I’ve ever done. Thank god it was foggy so I couldn’t see the drop. The man in front of me was so scared he was crawling on one knee, grabbing at bits of rock sticking out, whilst dragging his other leg behind him. Rich had to keep encouraging me, and the man in front, to keep going. He shook our hands and thanked us for the support as he daren’t look round at the time.


After this section I thought we were at the top. I didn’t realise that we had another 10-15 minute walk to reach the summit and the café! About halfway along I got upset again as I was so exhausted that I was struggling to keep going due to the bitter cold and wind. Rich spurred me on with the offer of a hot chocolate in the café. As suggested by the wardens, we didn’t attempt climbing up the stairs to the brass plaque because of the strong winds. Some people were crawling/walking up there and coming down on their bottoms. There’s no railings and a drop off the side. I’d nearly been blown off my feet a couple of times so no chance I was going up there!


We had a hot drink and a sausage roll. I did check out the price of the train down but it was £27 per person, plus all trains were fully booked...unfortunately!


We descended via the Llanberis path. This path wasn’t scary at all. It was just one long slope, a bit steep in places. My legs were like shaky jelly all the way down and my toes were killing from constantly being forced in to the front of my boots. It was still pretty rocky most of the way and I slipped a few times, luckily I was holding Rich’s hand the whole time.


I’m glad I’ve done it and raised over £1,500 to be split between the main association and the Norfolk and Waveney branch.” Though Karen also said, “never again”, something I suspect we all understand!


We are very grateful to Karen for her outstanding bravery and determination, and to Rich for his support and encouragement. Thank you both!


If you wish to add to Karen's total please visit her JustGiving page.


Background article in the Eastern Daily Press here



Monday 5 and Tuesday 6 August Bucket Collection at Tesco's Sheringham

Anne Gillett, who arranged the collection expressed her thanks to everyone who supported the Branch with their one to two hour 'slots' holding a bucket.

I think most people found the time went very quickly, the store was very busy during Sheringham Carnival week.


The bucket collection went really well with a fantastic total of £477.22 collected over the two days.


We are hoping this will become an annual event after the store's Community Champion has negotiated with her Manager.


Watch out for the dates next year when, once again, we would greatly appreciate your help.


Sunday 4 August – Bannaroo festival 2019 at The Banningham Crown


Jeannie, owner of The Banningham Crown, invited the Branch to host a stand at the festival.


Malcolm, Sue and Trish arrived early to set up the stand. We manned the stall in shifts with Ange joining us later in the afternoon. We raised £46.75 through the sale of merchandise and £42.30 from donations. A further £12 was raised from ‘Guess the name of the Cat’, the winning name was Benji and the fluffy white toy was won by a very happy lady!


It was good to have the opportunity to meet people and engage in conversation to raise awareness of MND and the work of the Association.


Thank you to Simon and Jeannie for organising a wonderful event with an amazing line up, and for making us so welcome.


Thank you to Christine Wells for making the bunting, which looked wonderful decorating the gazebo.


The photos show Malcolm with Sue, and Malcolm with Trish just after we had finished setting up the stall.



Making Norfolk and Waveney a healthier place to live

Your local NHS and care organisations are working together to plan for the future. Have your say and help shape the five year plan for the Norfolk and Waveney Health and Care Partnership:



"We all have lots of experiences of caring for others, and being cared for. Could you turn your experiences into good ideas about how we can improve the health and wellbeing of people living in Norfolk and Waveney? Your local NHS and care organisations are working together to plan for the future.


Join our online conversation to share your ideas and see other people’s suggestions. Your ideas might just save a life, so get involved and tell us what you want to see in our five year plan for health and care."


Primary Care Networks in Norfolk and Waveney

Primary care networks (PCNs) are new groups of GP practices working closely together with other community, mental health and social care staff to improve services for local people. People will continue to remain registered with their own GP practice, but working as part of a network will enable GP practices in Norfolk and Waveney to share expertise and resources.


There are 17 Primary care networks in Norfolk and Waveney. Click here to read a useful briefing summary explaining the new PCNs and to see which PCN your GP is in.


August 2019 - Jemima’s adventures


When John Newport’s old friend Norman died from MND, he decided to do something worthwhile in his memory. Although Norman never had a driving licence, he loved old cars and had a collection in his Welsh barn, one of them being Jemima, a 1937 Morris Eight pictured on the right.


Jemima had not been driven for many years and was in quite bad shape. John arranged with Norman’s widow to have Jemima brought to Norfolk for repairs. She has been up and running again for some months and has been the focus of John's fundraising campaign for MND research. She has also been the star attraction at a number of events in aid of the Norfolk, Norwich and Waveney Branch of the MND Association culminating in a bucket collection outside The Forum on 21 June, Global MND Awareness Day.


The original plan had been for John and his wife to drive Jemima from John O'Groats to Land's End. Later this was scaled back to a drive from Norfolk to Wales to raise funds for the MND Association Research Program, but the age of the car and lack of suitable sponsorship has made this unrealistic. We are very grateful to John and Jemima for the support they have given to MND Research and to the Branch.


MND is a cruel disease, if you would still like to donate money to fund research aiming for a world free of MND visit John's Justgiving page which will remain open for a while. John has contacted those who donated whilst he was still planning the road trip to tell them of the change of plans, except where the donations were anonymous.


To donate visit



Open Meeting at Upton Sunday 23 June 2019

The meeting held at Upton Village Hall began at 1pm. There was opportunity for conversation before and during lunch when members and friends of the Branch were able to have a good 'catch up'.

Open Meeting
Open Meeting
Open Meeting
Open Meeting

We were very pleased that Helen Copsey, MND Coordinator, and Emma Larner, Respiratory Physiotherapist, were able to join us. Merchandise was on sale throughout and raised £74.50.


A cold lunch of a variety of delicately prepared sandwiches and a splendid array of delicious cakes was served to each table. Our caterers, Kelda’s Kitchen, came round to offer tea and coffee throughout the meal.


Everyone seemed to enjoy the food, there was very little left over at the end but none was wasted as Judy and others organised the preparation of small packages of cakes to take home.


After lunch Dr Godwin Mamutse, Consultant Neurologist at the Norfolk and Norwich University Hospital gave a presentation covering the symptoms and management of MND. He encouraged people to interrupt and contribute their experiences and questions throughout his talk.


Dr Mamutse has kindly shared the power point presentation that he used to structure his talk which can be accessed here. We are very grateful to him for sharing his expertise and enthusiasm for the care and support of people living with motor neurone disease.


The raffle raised £125 and the winning tickets were drawn at the end of the afternoon.


It is sometime since we organised a survey to find out what people wanted from our Open Meetings; there were very few responses on the last occasion. However, we are always open to feedback and are grateful to those who take the time to share their feelings – it is only in this way that we learn what works and what needs to change for the future.


Sunday 23 June 2019 Waitrose and Partners (North Walsham)

Sua and Jo at Waitrose

Sue and Jo were happy to receive a cheque made payable to the Branch for £254 from Waitrose Partner Caroline Bull on behalf of Waitrose and Partners North Walsham.


Following an application the Norfolk, Norwich and Waveney Branch of the MND Association were selected by Waitrose and Partners (North Walsham) to be supported through their Community Matters scheme for May 2019.


We were asked to select an area of our work to feature on the box for Green Token Votes.


We chose our Open Meetings and anticipate putting the money towards the next one at Wortwell on 17 November, where it will go some way to meeting the costs of hiring the venue and providing lunch, it can also be used to help pay transport costs for people living with motor neurone disease where needed.




Friday 21 June 2019 members of the Branch mark Global MND Awareness Day

June 21 was chosen by the International Alliance of MND/ALS Associations as Global MND Awareness Day because it marks the summer solstice, a turning point. Each year the Global MND/ALS community undertake a range of activities to express hope that this day will be another turning point in the search for a cause, treatment and cure of MND/ALS.


Members of the Norfolk, Norwich and Waveney Branch of the Motor Neurone Disease Association received an invitation to a garden party hosted by The Duke of Buccleuch to mark the charity’s 40th anniversary.


Malcolm Chubbock and Anne Gillett represented the Branch, joining more than 250 MND Association volunteers from across the country at Boughton House in Northamptonshire, the Duke’s family seat in England, on Global MND Awareness Day. Described as 'The English Versailles', Anne and Malcolm enjoyed their visit, and although there wasn't time to view all that the estate has to offer they had the opportunity to take photos in front of the house.


Guests were invited in recognition of their contribution to the Association. The day included an opportunity to tour Boughton House, visit the gardens, reminisce with the Association’s founders and learn more about MND research from scientists working in the field. During afternoon tea, guests also heard from Jane Hawking, wife of the Association’s late patron Professor Stephen Hawking, and their daughter, children’s author Lucy Hawking.


Malcolm and Anne were delighted to talk with Dr Jane Hawking during the afternoon.


The garden party is one of two events being staged nationally to mark the 40th anniversary of the Association. The second is an art exhibition at the gallery@oxo on London’s Southbank from 2 to 6 October 2019 featuring work created by, or affected by, people with MND.


Awareness Day
Awareness Day
Awareness Day


Back in Norfolk, John Newport and Sue Heal invited people to come and meet Jemima, a 1937 Morris Eight, outside the Forum.


We had a permit to hold a street collection on the day to raise money for the Branch, but more importantly we were looking to raise awareness of MND and the work of the Association locally. The collection raised £270.57.



We trialled the use of a cashless collection tin – it worked well other than switching itself off between donations! Note the splendid bunting made for us by one of our supporters – we plan to use it on many occasions.

 When John Newport's friend Norman Palmer died from motor neurone disease he decided to do something worthwhile in his memory.


Norman had a collection of old cars in his Welsh barn, one of them being Jemima. Jemima had not been driven for many years and was in quite bad shape.


John arranged with Norman’s widow to have Jemima brought to Norfolk for repairs, and she is now back on the road – indeed John collected Sue allowing her to experience the delights of a vintage car on the way to The Forum. Jemima has been the focus of a campaign in aid of MND research and has also been involved in local fundraising events for the Branch aimed at making life easier for people living with MND.


Sue invited Norwich City Councillors to drop by and talk with us during the day. We were glad that four councillors came to see us and several more sent messages of support. We were pleased that the online EDP included a short article written at the end of the day.


The Branch also marked Global MND Awareness Day locally with the annual light-up of Norwich City Hall in blue and orange, the colours of the MND Association. We are very grateful to Cllr James Wright for taking this video of the lights:




 Wednesday 12 June, Quiz night at Birkbeck Hall

The Norwich branch of Brown & Co hosted a quiz night at the fabulous Birkbeck Hall in the Great Hospital, Norwich. It looked wonderful decorated with Association balloons in blue, orange and white. The look was enhanced by a table heavily laden with raffle prizes.


Malcolm was invited to say a few words when all the quiz teams had arrived for the start of the evening. He spoke about about motor neurone disease, the Association and the work of the Branch.


The evening raised £4,107 for the Motor Neurone Disease Association. We would like to thank the organisers and everyone who attended for their generosity helping to raise such a fantastic sum. Thanks are also due to Colette at Brown and Co. for sending the photos.

Birkbeck Hall
Birkbeck Hall
Birkbeck Hall


Carers Week 10-16 June 2019


The theme this year was 'Getting carers connected'. Carers of people with motor neurone disease (MND) travelled to Parliament during Carers Week (10-16 June) to raise awareness of caring.


Dianne Hepburn from Norfolk and Richard Webb from Cheshire spoke to MPs about their experiences of caring for their spouses, the challenges they face and what the Government should do to better support carers.


Dianne, who leads the Carers Friendship Group that meets at Tapping House near King’s Lynn, said “I was delighted to be asked to represent the MND Association at this Carers Week event, where I was able to speak with my MP Sir Henry Bellingham about the importance of support and recognition that carers need.”


The event provided an opportunity to raise the profile of the role of caring and to recognise and celebrate the contribution carers make, and to highlight the challenges carers face. You can read more about this event at


Did you know that the Association has an online forum exclusively for those affected by motor neurone disease? That includes carers. It is great peer to peer support. Register for free at


Saturday 1 June, Songs from the Shows

Jodie, Jane and Zaira
Jodie, Jane and Zaira

Local pianist, Jane Everard and vocalist duo Zaira Palumbo and Jodie Wiggins performed songs from some of the best loved shows such as My Fair Lady, Sound of Music, Mamma Mia and many more.


Anne Gillett and Malcolm Chubbock were happy to be able to accept an invitation to this free fundraising concert at Swanton Abbott Village Chapel. They greatly enjoyed the afternoon.


Malcolm was asked to say a few words before the retiring bucket collection, which raised an amazing £1,033.10 (with a few additional donations sent in after the concert). Tea and delicious cakes were served at the end of the concert.


Our thanks to Jodie, Jane and Zaira, shown in the photo.

We look forward to adding a short piece written for us by Jane.


Sunday 12 May 2019 Thetford Garden Centre Bucket Collection

We were fortunate in having a wonderfully sunny day for our bucket collection. Jemima looked splendid. A number of people stopped to talk with John about the car, some reminisced about family holidays their Morris Eight.



Despite a lower footfall in Thetford than Norwich, we were very impressed by the number of people who donated and helped us raise £208.19. The day had the added benefit of raising awareness of MND and the work of the Branch. Our thanks to a small team of volunteers who were able to help on the day – and to the staff at the Garden Centre who made the collection possible.



Saturday 27 and Sunday 28 April 2019 Notcutts Bucket Collection

When John Newport’s old friend Norman Palmer died from motor neurone disease, he decided to do something worthwhile in his memory. Norman had a collection of old cars in his Welsh barn, one of them being Jemima, a 1937 Morris Eight pictured. Jemima had not been driven for many years and was in quite bad shape. John arranged with Norman’s widow to have Jemima brought to Norfolk for repairs, and she is now back on the road. Jemima and John are now helping to raise money locally for the Branch.


Jemima, John Newport and a team of hardy volunteers held a bucket collection at Notcutts Garden Centre in Norwich. John had been interviewed by Radio Norfolk ahead of the event. Several people at Notcutts said they had heard the early morning Radio Norfolk interview on Saturday. John also had an interview with Park Radio, Diss, on the following Monday. We are grateful to John for creating these opportunities to help raise awareness of MND. Despite the cold weather and plenty of rain all went well. We were delighted by people's generosity; a total of £466.04 was raised over the two days.



Saturday 27 April 2019 – The Highland Fling Ultra Marathon

by Joe Gilbert
Joe Gilbert

The Highland Fling is a fifty-three mile Ultra Marathon. It is one of the busiest and toughest ultra marathons in the UK, taking in steep climbs and tricky terrain. I, together with my running partner Eric, joined around 800 runners at the start line; over 150 did not finish, a record number, mostly due to the weather and terrain.


After a long drive the day before and a late night worrying and packing drop bags, the alarm was set for 04:20 – time to force down porridge and nerves before a 06:00 start. The forecast was for cold and rain all day, but it was dry for the start. A brief from the race director and we were off through Milnagavie town centre and then onto the start of the West Highland Way. The scenery was fantastic, initially following forest trails with runnable uphills and downhills the first 8/9 miles were a dream, relatively flat paths and nice terrain. We were in good spirits, despite my gut issues and bad cramping.


After a kit check we started the uphill of Conic Hill. The sun disappeared and rain started, gradually at first, but as we went further up Conic Hill the rain was getting heavier and colder. Rain jackets were back on but we were already soaked through and cold. We ran as much of the uphill as we could until we hit the really steep slopes to the summit. Power walking replaced running and we both felt good. We hit the top of the hill at mile 18, absolutely soaked and freezing cold. The scenery was incredible despite the rain, Loch Lomond opened up in front of us. The descent started off quite runnable, but then got more gnarly, the rocks turning to large wet slab steps and everyone had to slow down to watch their footing. Once lower down the hill the terrain became more manageable and we pushed on to the next checkpoint. It was mile 20, and I was feeling good as I saw my wife and son waiting for us.


Joe Gilbert

The next section included some really steep climbs, they were absolutely leg draining and kept coming – steep uphill after steep uphill. At this point I started having issues with my shoes, my right shoe was getting really loose and coupled with being so wet the sole was slipping forward on each descent – which made me feel panicky as I worried if my shoes would last to the end of the race. Yet, still we pushed on, running over beaches and more hills, the paths started to be replaced by roots, rocks and mud, and the terrain was starting to punish my legs. The rain was now really heavy and we were running through constant puddles. We reached Rowardennan at mile 27. I moved from sugary sweets to peanut butter sandwiches and Kendal Mint Cake. I put the next 20 miles or so down to Kendal Mint Cake and the sugar hit!


The next section was meant to be really technical, but I didn't know what to expect. We quickly found out – single file, large wet rocks and thin path made mostly from tree roots. We couldn't see what was coming up and followed the line of the runner ahead so as not to trip as we followed the path and ledges with a drop into the loch next to us. The only runnable paths we came across were long climbs, beyond anything we could train for in Cambridgeshire. We had to run-walk most of them, but the thin path, twists and turns, steps up and jumps down, river crossings and bridges were taking their toll. We had both picked up injuries!


Joe Gilbert

Inversnaid came at mile 34 with fantastic views, incredible Marshals, more mint cake and peanut butter sandwiches for my bag – and off we went. The terrain was now getting ridiculously unrunnable. With big rocks to climb up using your hands and rocks to drop yourself down a large drop, and very stiff legs, this section wasn't about running, but finding the most efficient line through the terrain. The technical section went on for what felt like days and when we reached the end of the loch and roots and rocks turned back to grass, steep climbs and puddles I felt mentally and physically exhausted. We were in survival mode.


We emerged from the next checkpoint at 41 miles pretty shattered. Morale was low at this point. I was soaked through and absolutely freezing. We knew we had 7 miles of steep climbing. By now the paths were really muddy and flooded in many places. At one point I thought we had reached a dead end when we arrived at a waterfall, only to realise that it was the path but with water absolutely pouring down it from the top of the mountain. I just wanted to see Jess, my wife and son Leo and have a mental reset, but we were making slow progress. Our energy sapped and limping we were counting down the miles. Finally we came round a corner and I saw a marquee and lots of flags – it was the next checkpoint at mile 46. We both started running towards them. Something as simple as seeing a familiar face can brighten your mood, I was in awe that they stood out in the soaking rain waiting. I left this checkpoint knowing I'd finish the race.


The next section was slow and this is where I really needed some motivation. I thought of my Mum with MND that I was fundraising for. I thought of my son's chuckle and of our holiday lined up. I thought of all my generous friends who had donated to my justgiving page. From here on I kept getting bursts of energy, or determination more like. I wanted to finish now and get in the car and warm up. We started running faster than we had for a long time, but the finish line wasn't getting any closer. A few last hills as a cruel punishment between us and the finish line to finish off our legs, we were forced to walk a few more times – and then I saw some marshals who told us the finish line was just 500 metres away. A bagpiper stood up when he saw us come round the corner and started to play and emotion came running through me. I had done it in 11 hours 24 minutes and 7 seconds, the toughest challenge in my life – with thanks to Jess and Eric for their support at every stage.


As of 4 June Joe had raised £2,583.75, if you would like to help him reach his target of £5,000 for MND Research visit



Sunday 7 April 2019 AGM and Open Meeting at St Andrew’s Church Hall, Eaton

Malcolm was good to his word and kept the AGM part of the meeting short and focused, helped greatly by Helen’s excellent organisation. A cold buffet lunch was prepared and served by Eric from The Butchers, Swanton Morley. As always there was a lot more food than we could manage to eat! Eric is pictured below with volunteers Anne (an Association Visitor and Committee Member) and Gill (an Association Visitor and Care Service Navigator).


After lunch Richard Cave, MND Speech and Language Therapist Project Manager at the Motor Neurone Disease Association gave an excellent presentation on voice banking. He encouraged everyone to interrupt and ask questions throughout his talk - which happily people were pleased to do. Richard demonstrated his own banked voice using two different pieces of software. There seemed to be agreement that the system which was quicker and where fewer phrases had to be banked gave a clearer more accurate voice. Richard has kindly shared the notes that he used to structure his talk which can be accessed here.


There is more information on the Association website. Professionals can access further information here.


Lindsay Goward presented long service awards to Trish, Judy and Sue.


One of the highlights of our AGM was a cheque presentation made by Steve Rowe to Malcolm Chubbock, Branch Chairman. Belinda, his wife, gave a very moving speech in which she spoke of attending open meetings with her late father, John Francis. She said that being amongst others facing the same difficulties in everyday life he found the support and friendship from each and everyone involved with the Association invaluable. When Steve became the Men’s Captain at Bungay and Waveney Golf Club, it was agreed that the Norfolk, Norwich and Waveney Branch of the MND Association would be his nominated charity. Belinda went on to talk about the events that culminated in such a terrific amount of money being raised, and spoke appreciatively of the generosity of members and golfers who helped them exceed their own target. You can read Belinda’s words in full here.


Sunday 10 March 2019 – Morrisons bucket collection

The bucket collection at Morrisons Catton branch raised £157. Our thanks to those who gave up time to collect and to raise awareness of motor neurone disease, and especially to Anne Gillett for organising the event.



John Wilde

Monday 25 February 2019 Wymondham Lions Meeting

John Wilde, President of the Wymondham Lions, presented Sue Heal with a cheque for £250 for use by the Branch in support of people living with MND.


Lions clubs support a range of good causes and charities.


Cllr Joe Mooney, a Wymondham Lion, nominated us for receipt of a donation.


We are very grateful to the Lions for their generosity.


Whilst there Sue was given the opportunity to speak about the work of the Branch and our current campaign - #Scrap6Months.


A number of those present signed our petition asking the government to change the law so that all people with MND are able to access benefits under the Special Rules for Terminal Illness.





Zoe Anderton's debut harp CD - 25% of sales go to Motor Neurone Disease Association

Zoe Anderton's debut harp CD is raising money for the MND Association, donating 25% of the sale price of her CD in memory of her friend David, a Norfolk musician who died of MND in 2014.


You can see more on her Facebook page at

More details on how to order the CD can be found here: