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.

 

 

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 Chinny's, Halesworth where they plan to arrive at 12:30pm on 6 May.

 

The walk is in memory of Mitch Block, who died of motor neurone disease.

 

The photographs taken at the start of the walk arrived just in time to make it into this edition of Fightback, thanks to our roving reporter Malcolm Chubbock! Dean Boast, also pictured, is driving the back-up car. If either of the walkers have to drop out he will take over so that there will always be two people walking.

Charity Walk
Back at Chinny’s 6 May 2018
Paul Ablett on the left.

 

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.

 

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.