News 2022
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 28 May 2022 A special afternoon cream tea in aid of the branch
This was a ticket only event with two sessions to cater for up to 80 people. In addition to the delicious tea there was a stall full of home bakes and craft items. For £1 a ticket the tombola raffle offered good value with fabulous prizes to be won.
We are very grateful to everyone who made the event possible pictured from left to right – Jude Heinrich (wearing the MND t-shirt), Jan Molyneux, Jan Sears, Eileen Keeble, Barbara Booth, Jan Amiss, Corinne Riddle Croft and Maureen Morgan.
And of course our thanks go to everyone who attended and helped raise the amazing sum of £801.85.
Saturday 21 and 28 May 2022 Garden Plant Sale
Peter Goldsmith
On Saturday 21 May, Margaret and Peter Goldsmith opened their garden in Norwich to sell plants from 9am until 4pm. They raised around £840 from the sale of plants.
This was a wonderful total, but there were still plants left at the end of the day and they very kindly offered us a second opportunity to go and buy plants the following Saturday to raise even more money to support the work of our branch.
The grand total from the two days was £1,045 for which we are extremely grateful.
Sunday 24 April 2022 AGM and Open Meeting of the Norfolk, Norwich and Waveney Branch of the MND Association
Malcolm Chubbock, Branch Chair began by welcoming everyone to the branch’s 27th Annual General Meeting, and commenting that it was so nice to meet in person. We were joined by branch members and supporters, committee members, healthcare professionals, Association Visitors and Catherine Knights Association Trustee.
After the usual housekeeping Malcolm encouraged those who were not members to join the Association and to take advantage of the benefits this offers. If you are a non-member reading this you can read more and join here. This was followed by his annual report which began with a brief account of our income and expenditure, the later included £12,581 on patient care. Our branch members have also benefited from generous funding towards equipment from MyName’5 Doddie Foundation, Darby Rimmer MND Foundation and Challenge MND. He thanked everyone who raised funds, made donations or raised awareness of MND on behalf of the branch.
Malcolm thanked the neurology nurse specialists who support families affected by MND, our Care Service Navigator and Association Visitors. He expressed our appreciation for the support given by the Norfolk MND Care and Research Network and the team at the Norfolk and Norwich University Hospital and University of East Anglia. We were delighted to be joined by Helen Copsey (MND Coordinator) and Emma Larner (MND Respiratory Physiotherapist), who both gave up their free time to join us.
Malcolm also thanked members of the committee for their contributions to the smooth running of the branch as we continued to adapt to new technologies to allow meetings to continue.
Before giving the Campaigns Update Sue Heal thanked Malcolm for all that he does for the Branch, and paid tribute to his mother Eileen who passed away peacefully earlier this year. Both Eileen and Bryan were staunch supporters of the branch and had been amazing fundraisers since the branch started life in 1995.
Sue talked about the successes of the Scrap6Months Campaign and the United2EndMND campaign, though stressed that there were still areas needing further work! She thanked everyone who signed petitions, signed letters and wrote to their MPs and stressed the value of writing personalised emails to constituency MPs.
The third piece of good news she shared concerned the Act to Adapt Campaign. The Government has published new guidance for local authorities in England on Disabled Facilities Grant (DFG) delivery.
The guidance includes a specific section highlighting MND and specific needs that may arise following a diagnosis. It includes the Act to Adapt campaigns main asks, fast tracking people with MND and no means test for work up to £5,000, as examples of good practice by councils. It goes further in addressing the needs of people with MND who wish to keep working for as long as possible.
Locally the good news is that following our campaign, and reading the Act to Adapt report, Broadland and South Norfolk District Councils have introduced a Serious Illness Grant of £5,000, which is not means-tested and is there to put small adaptations in place quickly – even if people then go on to apply for a Disabled Facilities Grant.
Sue encouraged people to get involved by joining the Campaign Network. She also spoke of the cost of living crisis and asked people if they would consider signing a petition asking the Government to “Provide an energy grant to people with a disability or serious medical condition”.
The eight current members of the branch committee were re-elected en-bloc, though Malcolm did ask people interested in joining the committee to speak with him – we there is always plenty to do and you will meet with a warm welcome!
After any other business and questions we paused for a delicious lunch prepared by Kelda’s Kitchen. Lunch was followed by tea, coffee and chocolate, and time for some socialising.
Malcolm spoke briefly after lunch to give an update on our strong start to fundraising this year with some fantastic events, which you can read about here on the News page. To give some idea of the impact the pandemic has had on fundraising; in 2019 the amount raised was £31,000 but for 2020 and 2021 it was £19,000 and £5,000 respectively. He also advertised some events that you can find on our Future Events page, and made a plea for volunteers to help us at the following events:
- Monday 11 July – Barnard Charity Day at Bawburgh Golf Club
- Sunday 7 August – Hoveton Village Charity Fete.
Catherine Knights,
MND Association Trustee
The guest speaker, Catherine Knights, MND Association Trustee gave an insight into what led her to get involved with MND Association and insight into the role of a Trustee. It was clear that whilst it is a lot of work, it is also a very rewarding role and we thank her for taking it on and sharing her experiences with us.
Catherine welcomed questions and comments from the attendees.
Peter expressed his wish that there was more emphasis on the simple questions when considering what people need and less on strategy which can seem out of reach from the urgent needs of someone living with MND. Catherine responded that everything the Board considers and discusses is with ‘how will this benefit someone with MND’ at the forefront of their minds, whether that be supporting people with MND or research to help people in the future.
Peter raised the issue of what to do with used equipment, which is often hard to dispose of. Catherine acknowledged that although there is no easy answer due to health and safety requirements, practicalities such as storage and collection etc she would raise the issue with the Board.
The discussion opened up to all attendees and several suggestions were made about what to do with equipment that is no-longer needed:
- Some charities, for example Salvation Army and Age Concern, will take certain equipment.
- The MND Forum contains some information, whether it is people asking for equipment or giving information about charities that will use the equipment abroad.
Of course, no open meeting would be complete without the raffle, which raised £120 – there were some excellent prizes on offer as usual. Sale of merchandise raised £63.46. Our thanks to everyone who attended, bought raffle tickets and merchandise, and helped organise, set up and clear away at the end of the meeting.
Click image to enlarge
Saturday 23 April 2022 North Walsham Rugby Football Club cheque presentation
Malcolm Chubbock, Branch Chair was invited to attend the last home game of the season at North Walsham Rugby Football Club when the Vikings were scheduled to play against Maidenhead. He was also invited to join them at their pre-match lunch.
Prior to each home game the North Walsham RFC host a lunch for members and guests and hold a raffle, with the profits going to a charity fund. The lucky recipients are advised at the end of the season. This year it was our branch, and Ashley Hicks contacted Malcolm to pass on the good news! The club is aware of the valuable support given by the Association to two of their members who lived with motor neurone disease (MND). The club members are also aware of high profile rugby players such as Doddie Weir, Rob Burrows and Joost van der Westhuizen. Indeed the club was kind enough to spread awareness of the petition launched by Doddie Weir asking the Government for increased funding for urgent research into devastating motor neurone disease as part of our United to End MND campaign.
This year the club raised £3,000, which was transferred to our branch bank account a few days before the match. An official presentation took place on the pitch at half-time. Also present in the photo with Malcolm is Jeff Blackett, President of the Rugby Football Union based at Twickenham, Dave Horne, North Walsham Rugby Football Club President, Ashley Hicks, Director of Finance and Keith Jarvis, Charity Fundraiser. We are hugely grateful to everyone at North Walsham RFC for their generosity in helping raise such a wonderful sum in support of people living with MND.
It was a good day for the club too, the final score was Vikings 52, Maidenhead 22 providing a great end to a successful season; they will find out in May if they have gained promotion to the next tier of rugby.
Photo from left to right: Dave Horne Club President, Keith Jarvis Charity Fundraiser, Malcolm Chubbock Branch Chair, Ashley Hicks Director of Finance and Jeff Blackett President of Rugby Football Union.
Sunday 13 March 2022 MND Association Charity Tattoo Day
The Deerheart Collective in Lowestoft organised an event with a difference to raise money for the Norfolk, Norwich and Waveney Branch of the MND Association. Their aim was to help provide support for local people living with MND. They planned to tattoo as many “Keep moving” tattoos as they could during the day, each for the price of £50.
There was no need to make an appointment, instead there was a steady supply of tea, coffee and cake to purchase throughout the day whilst people waited their turn. In addition they held a raffle with plenty of prizes – thank you to Lisa who delivered a large number of bottles to add to the total!
According to those who were there on the day to get their tattoos it was an incredible turnout and people enjoyed being part of the Deerheart Collective event. Unfortunately, due to the weather they didn’t get as much foot traffic as they had predicted, however they kindly added in a few individuals who went in during the following week to get their tattoos! Martin, one of the tattooists said, “it was a great day, amazing atmosphere”. He also commented on the importance of hearing first hand about the experience of families who had lost loved ones to MND during the day.
The final amount raised on the day was a fantastic £3,234.73. Of this £666 was raised from an online raffle, which was donated straight to MND association – the remaining £2,568.73 was donated to the Branch. A huge thank you to Martin and all of the Tattoists at the Deerheart Collective for their support. It is appreciated!
Saturday 26 February cheque presentation by Copperfield Lodge 9851, Gorleston
Brian Caton of Copperfield Lodge, based in Gorleston, contacted Malcolm, branch chair, to say that he would like to make a donation of £1,000 to the branch in memory of Bob Rackham who died from MND.
We are very grateful for the funds which were raised over the course of a year from various small events including a raffle.
The cheque presentation took place on Saturday 26 February in Malcolm’s front garden.
Pictured from left to right Malcolm Chubbock, Brian Caton, James Gray and Paul Rackham.
Wednesday 23 February, Memories Never Disappear Agnes held at the Norwich Arts Centre
by John Davy
The idea was quite simple. While Agnes was here, I knew she was hugely grateful for the support we got from the MND Association. She was equally keen to engage with research and ideas about how we could give something back.
It was one of those things that we did not talk about what would happen after Agnes was gone. It was not something she ever wanted to do, so I had to develop a way for Agnes to have a lasting and positive legacy for the MNDA.
What better way to do it than ask some bands we liked to come and play in our City in Agnes' name?
I reached out to my great friend James Carrington and the Blackheart Orchestra, and when they both said yes, the work began.
Two months later, the gig night was upon us, and a festival of music took place for 162 ticket holders.
Both Artists had new albums, with James playing all the tracks from the new album "A quiet place in Bright Sunshine" and the Blackhearts playing hits like Sebastien. A few drinks, some laughter and some tears, along with some great music. What more could you want?
Companies sponsored artist fees, so £20 of every ticket sold goes directly to the MND Association. Half for research and half for our local branch.
And then came the just giving page. Supported by individuals and business colleagues, we currently stand at £11,386.00 raised with more expected soon.
At the very start, I hoped we would get to £10k, so to surpass that by such a large amount has genuinely been a blessing.
It was a party on the night with Artists and fans having a great time. The endless winter is always followed by the light of summer to come. It was great to get the music to shine brightly at the end of February, to have a night that we could all enjoy, and one for which Agnes would be rightfully proud.
Liz Cooper added, “I was delighted to have been a part of the fundraising event arranged by John Davy in memory of his late wife Agnes. The bands were fantastic and the atmosphere really amazing. There was so much support in the room! John kindly invited the MND Association to have some stage time to say a few words about our work which was received with such positivity. I have been watching the JustGiving page set up in memory of Agnes it just keeps increasing! Our heartfelt thanks to John, his family and the team for putting on this amazing event.”
The Norfolk, Norwich and Waveney Branch would also like to add our thanks to John for hosting such a wonderful event. We would like to extend our thanks to James Carrington and the Blackheart Orchestra for the wonderful music on the night. It was a joy to listen to the concert that was streamed online. Thanks also go to John’s team who worked so hard behind the scenes on publicity, and shared images and videos with us to add to our social media.
Saturday 12 February 2022 Snowdrop charity day at Walsingham Abbey
The Walsingham Abbey estate opens its famous snowdrop walks from late January until early March. Those who have visited before will know just how magical the grounds look carpeted in snowdrops. If you haven’t yet experienced that pleasure then we would invite you to look at their website and maybe visit before the snowdrops fade.
Each year they donate a day’s admission at the height of the season to a Norfolk charity. We were told that this attracts anything from 300 - up to a 1,000 people depending on the weather on the day, and at £6 admission per adult can raise a worthwhile sum. This year the Estate Directors chose the Motor Neurone Disease Association to benefit from their charity day on 12 February 2022.
We were incredibly lucky with the weather, and the snowdrops obliged by coming out on time. Three volunteers from the Norfolk, Norwich and Waveney Branch were able to attend and can attest to the fact that it really was a wonderful day. We are delighted to announce that Walsingham Estate have paid £5,965.50 into the Branch account. Thank you to everyone who visited on the day, and all those who work hard behind the scenes to make the grounds so special.
Our thank also go to the Matthews family who organised the teas and refreshments in the parish hall in Walsingham High Street and drew in many of their family and friends to help. There were lots and lots of delicious homemade cakes, to quote Grace (our membership secretary), “I have never seen so much cake in all my life”. Another volunteer mentioned five tables laden with cakes, scones and sausage rolls. Thank you so much to everyone who baked and/or helped on the day, what a fantastic effort! There seemed to be a steady queue of people throughout the day and the hall was always busy. They raised over £1,600 from sale of refreshments, this sum was augmented by a bucket collection, and a total of £2,300 was transferred to the Branch account after the event.
The estate, the Matthews family and Branch all publicised the event and our JustGiving page, and donations started to come in steadily in the days leading up to the event and afterwards. As of 28 February donations totalling £751 can be seen; this will increase once gift aid is claimed. However, there are other donations where the sum donated and donor remains anonymous, which will be added to the total that we receive – to be updated when we are able. There were many lovely messages for Colin and the Matthews family. Thank you to everyone who has donated to our JustGiving page which remains open for donations. Our thanks also go to those who made personal donations directly to the Branch.
Special thanks go to Elizabeth Meath-Baker for appearing on Radio Norfolk to publicise the event and raise awareness of motor neurone disease and the support offered by the MND Association locally in Norfolk.
We are grateful to Walsingham Abbey and the Matthews family for all the work they put into making Saturday such a success. Our thanks too to those who visited on the day. The money raised in support of the work of the Norfolk, Norwich and Waveney Branch is hugely appreciated; the total raised has gone beyond our wildest dreams and will be used in support of people living with motor neurone disease.
The Wild Rovers singing group held an event that evening and donated £440 to the Branch.
Our thanks for permission to use the photos supplied by Elizabeth Meath-Baker.