MND Association. Norfolk, Norwich and Waveney Branch

 

News 2019

Fightback

 

May 2019

February 2019

 

 

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.

 

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.

 

Jemima
Jemima

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

Dianne

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 https://www.mndassociation.org/mnd-carers-take-their-case-to-westminster/

 

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 http://forum.mndassociation.org/forum.php

 

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.

 

Jemima

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 https://www.justgiving.com/fundraising/mndmum

 

 

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 https://www.facebook.com/1374270202891509/posts/2226507727667748/

More details on how to order the CD can be found here: http://www.zoeanderton.co.uk/cd.html