Norfolk, Norwich and Waveney Branch



News 2022



June 2022

March 2022



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

Cream tea

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
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
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.