NEWSLETTER

Inside:Goodbye Jane EvansClowne Half MarathonCollege Pines GolfBig Steps of Hope

www.mndsouthyorkshire.orgFacebook: southyorkmndTwitter: SYMNDA

Registered Charity No. 294354Patron: Suzanne Maguire

SPRING 2020Motor Neurone Disease Association South Yorkshire Branch

Newsletter Sponsors

Welcome to the Spring edition of the South Yorkshire Branch NewsletterAs the Branch commences another year of raising awareness and fundraising events, we look forward to seeing as many of you, your families and friends at our planned events. It is not just a way of raising much needed funding so that we can support as many of you as possible, but also as a way of getting to know you and for you to put a face to members of the Branch Committee. Do come along to the Open Meetings and as many events as you are able - a list of the proposed events can be found on our website. Please let us know if you have any ideas for fundraising or want any help or Branch Committee attendance at your own events; Geoff Bland is the person to contact regarding fundraising; and of course, please continue to send any items for consideration for inclusion in the newsletter. Please bear in mind that due to data protection, any photos you send should have the permission of the person involved.Since the last newsletter there have been some changes that we need to share with you. The first thing is to let you know that

Jane Evans, the Regional Care Development Adviser is leaving after 22 years of dedicated service to the Association and the Branch. You will find a tribute to her within this edition, and I’m sure you will all want to join with us in thanking her for the support and friendship she has given to all those with whom she has come into contact over the years; her quiet, calm manner, not to mention her invaluable knowledge will be missed by us all. Thank you Jane.There has been a change of address of the Association in Northampton. The new address is MND Association, Francis Crick House, 6 Summerhouse Road, Moulton Park, Northampton NN3 6BJ.Their telephone number (01604 250505) and the MND Connect Helpline (0808 8026262) remain the same. Please remember to let us know of any changes to your contact details.I hope you find something of interest in this Newsletter - we do try to keep you informed and up to date with the latest research developments, any projects with which you can be involved as well as all the fund raising events we have planned. As always, thank you all for your support. Editor

Chairman’s Report Spring 2020It’s reflection time again, our Treasurer is busy preparing end of year financial statements and we are all gathering thoughts on past successes and our vision for the year ahead. I have checked out the predictions of Nostradamus for the coming year and as usual have decided not to be too concerned, although emigrating to the moon certainly sounds somewhat attractive especially after the year just gone; we have all just about survived. Needless to say, we have had another good year and as you will note from the Treasurer’s Report, our finances remain pretty healthy. This reflects the hard work of the committee and particularly our Fundraising Sub-group who continue to drive forward fresh ideas. I must once again pay tribute to our Treasurer who continues to serve the committee with skill and commitment. Without his dedication it is clear that we would not be in the healthy state we find ourselves in today. I should also mention our dependable Secretary who continues to keep me in line, which is never an easy job.Looking back over the year we have had good times and bad. The news of yet another well-known sportsman receiving an MND diagnosis has once again focussed the minds of us all and our thoughts are with Rob and

his family. On the good news front the arrival of MND-Smart is very exciting and the concept of testing more than one treatment against a shared placebo group is a very original concept and one which holds well for the future – volunteers for this project are wanted, and an excellent video is available on the MND web site. An aspect of our work which I would like to once again centre on is that of raising awareness and influencing. It is so important that we make the most of every opportunity to educate, lobby and influence all those we meet regarding this disease, which with some passion, we all want to see eradicated. We had an excellent opportunity recently when we managed to secure a spot at “Meadowhell” on a busy Sunday shopping day and it was inspiring to witness the genuine interest and concern showed by the general public. Not so encouraging is the lack of movement regarding the “Scrap6Months” campaign, it’s now 6 months since the government pledge to review the benefits system for people facing terminal illness. Now is the time to get this done and we need your help – if you are a “tweeter” then encourage your MP: https://bit.ly/37RAt3p#Scrap6Months.

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Treasurer’s ReportOur year end occurred on 31st December. We had a reasonable year, with income totalling £58,782 (2018 £61,931) but this was only because in the last quarter of the year, income of £26,938 was received thanks in the main to one very generous donation. Without this good ending to the year it would have been a poor year indeed. Despite this, we managed to maintain our expenditure on care, equipment and support of those living with MND at average levels, spending £36,601 in total (2018 £42,187). We also contributed £5,175 towards research. Our annual contribution to central funds was £6,507. These funds enable our National Office to support Branches countrywide, including our own Branch. Our bank balance at the year-end was £16,798, which leaves us in a good position to move forward into 2020.Thanks to all those who have supported and continue to support the Branch via fund raising or donations. Please note that cheques should be made payable to MND Association South Yorkshire (the South Yorkshire is important, as if omitted, it causes problems with the Bank Account) and sent to the Treasurer, Mr P Hebblethwaite at 55 Newfield Lane, Sheffield S17 3DD or paid directly into the Branch Account No 02972378, sort code 30-96-09.

Chairman’s Report contI would not wish to leave on a down note and so on behalf of your committee we would like to congratulate our very own “Bare Legs” Brian (as he seems to be known regardless of whether he is wearing pants or not) who completed an astronomical challenge when he succeeded in cycling a total of 2019 miles in 2019. Brian took up cycling again after 55 years to raise money and awareness for MND. Brilliant effort.Hopefully we will have met up at the AGM recently; if not best wishes to you all and a very prosperous and happy 2020. Mel

Appointment of Assistant TreasurerThe Branch Committee recently received an offer of help with the Branch finances from Kirsteen Booy, whose career background is in accountancy. At the AGM in February, Kirsteen was welcomed as a new member of the Committee. We are looking forward to this additional source of help and want to thank Kirsteen for being willing to give of her time to support the Branch. A more detailed profile will be included in the June newsletter. Paul

Past Carers’ GroupThe next meetings of the Carers of MNDA South Yorkshire Branch will be held on Sunday 19th April and Sunday 14th June at 2 00 pm at Andrew’s Café, Chapel Walk, Sheffield. We have returned to our original meeting venue by consensus of preference of meeting place. Past carers’ meetings are held on the Second Sunday of the 2nd month and all past and current carers are welcome to join us for drinks, cake and a friendly chat. Please contact Marlene Bryan (01709 941584) or Brian Jackson (0114 2376814)

Appointment of Area Support Co-ordinatorDue to the Association’s Regional Restructure, the Regional Care Development Adviser, (RCDA) Jane Evans, has chosen not to apply for the Area Support Co-ordinator post. Recruitment took place to appoint to the new post of Area Support Co-ordinator- a role that replaces the previous RCDA and Volunteer Development Co-ordinator roles but still covers the existing are of South Yorkshire, North Derbyshire and N & NE Lincolnshire. The recruitment panel appointed Jayne Thompson to the ASC positon and she will take up her post on 2nd March. Jayne has worked in the voluntary sector for the last 10 years and has a proven track record of developing and managing health and social care professionals. She currently works in the Emotional and Practical Support Services at Macmillan Cancer Support as a Volunteer Services Co-ordinator and has previously worked in similar roles including Age UK.Sarah Milner, Volunteer Develop-ment Co-ordinator (VDC) has chosen to take voluntary redundancy and was due to leave on 24th February but has kindly offered to stay until 13th March to help with handover and induction of new staff. Our thanks go to Sarah and Jane for their work on behalf of the Association.

Sheffield Open Meeting - Question & Answer Panel At our Open Meeting on 7th April, we will be hosting a team from the Neurological Enablement Service consisting of physiotherapist, occupational therapist, speech and language therapist/assistive technology specialist who will be speaking about their work and who will be happy to answer any questions. The Q & A session will last for approximately 1 hour and will be very informative and following this there will be time for our usual refreshments and a chat.

Goodbye to JaneWe didn’t think the day would ever come when the South Yorkshire Branch would be saying goodbye to Jane Evans…but it’s true.The new Regional Structure, within the Association, has created an Area Support Coordinator post to replace the Regional Care Development Adviser role and Jane decided not to apply for this new position.Jane initiated the formation of the present South Yorkshire Branch over 21 years ago, not long after she was appointed Regional Care Adviser here. She had previously worked locally as a Speech and Language Therapist, and this experience no doubt helped in her MND work. Her professionalism and expertise in supporting families affected by the disease and Health and Social Care professionals seeking information is what many people report about Jane’s time with the Association.The Branch committee are extremely grateful for all her hard work and input in many areas over the years and her friendship to us all. However, for many individuals it was her quiet, calm and caring approach at such a difficult time that helped them. For all of this, the Branch would like to say a massive thank to

Jane and wish her all the best for the future.We had hoped to make a presentation to Jane at the recent AGM but unfortunately, she couldn’t make it. We will be saying farewell as she finishes work this month, and if anyone would like to send best wishes or leave a message for Jane please contact Chris Naylor via her e-mail at Chris222@sky.com

Band Concert NewsThe Branch was sorry not to be able to host a concert in January as we have in the past. However, the good news is that we have booked the Stannington Band for Sunday 14th June at the Niagara Conference Centre, Niagara Road, Sheffield S6 1LU. The doors and bar will be open at 6.30 pm and the concert will commence at 7.30 pm. Tickets are £6 in advance, or £7 on the door, and are available

Retirement News and Thank YousThank yous must go to the following ladies who have recently decided to retire:-Maggie Lyons became involved with the South Yorkshire Branch many years ago when her brother was diagnosed with MND. When she retired from teaching, we were delighted that she decided to train as an Association Visitor. Throughout her time as an AV Maggie has supported numerous people with MND and their families. Her enthusiasm, wisdom and hard work will be greatly missed, and we wish her well for the future.

Cath Dennett has been providing the refreshments at Doncaster Open Meeting since the Branch first began holding meetings there. The Committee acknowledged Cath’s contribution to the Branch and flowers were presented to Cath by Mel at the meeting on 23rd January.

from the organiser, Mr T Peacock who can be contacted either via e-mail at trevorpeacock56@gmail.com or by telephone on 0114 2422956.Plans are underway to hold a Christmas Concert, involving Unite the Union Brass Band in late November, early December and details will be announced in our Autumn Newsletter.

Do you have a Motor Neuron Disease(MND)?

Have you made a decision aboutfeeding tube placement?

Would you like to help inform thedesign of a research project abouthow these decisions are made?We are planning a study to explore the decision making processes that take placewhen people living with MND are faced with the choice to have a feeding tube (e.g.gastrostomy or PEG) placed. It is important that the people with lived experienceof making this decision are involved in the design of the research.

If you are interested in either joining a group of people living with MND or a one-to-one discussion, to help in the design of this research, please can you contact thelead researcher, Sean White, on 07919541321 or e-mail atsean.white@sheffield.ac.uk.

Sheffield Teaching Hospitals NHS FoundationTrust

Dietetic DepartmentNurses HomeNorthern General HospitalHerries RoadSheffield S5 7AU

Phone: 07919541321Fax: 0114 2266997Email: sean.white@sheffield.ac.uk

Clowne Half MarathonThanks to Bridget Hemstock and the Clowne Road Runners for choosing the South Yorkshire Branch as their charity for the Clowne Half Marathon last November. It was a very successful event both in terms of fundraising and raising awareness. Bridget’s fundraising goes on this year however, and there will be more to report in our Summer newsletter.

College Pines GolfMembers of College Pines Golf Club in Worksop took part in a Charity Day in September to raise funds for the Branch. Pete Harper, 2019 Senior Captain chose the MNDA as his charity for the year. Committee members Geoff Bland and Dave Booker went along to the club to receive a cheque for £618 pounds. Our picture shows, left to right, Dave Booker, Ian Steadman (Seniors Captain for 2020), Pete Harper (Seniors Captain 2019), John Stimpson (Club Captain 2020) and John Redfern (Seniors Chairperson).

Change to Summer Evening Visit to Botanical GardensThere has been a change of date to our July Summer Open Evening at the Botanical Gardens. The date is now Tuesday 14th July, 6.00 pm NOT Tuesday 7th July, meeting at 5.45 pm with a guided tour commencing at 6.00 pm, followed by refreshments in the Education Centre. Please make a note of this change in your diary.

Join us at our annual Big Steps of Hope Tribute Walk to D’’Feet MND on Sunday, 23rd August 2020 in Graves Park, Sheffield. Big Steps of Hope is a special event that brings together families, friends, carers and supporters for a 5K Walk to d’feet MND. Last year, Big Steps of Hope raised over £3,500 in aid of the MND Association.

We are incredibly proud that Big Steps of Hope is now an annual event to remember all the loved ones, friends and colleagues lost to this cruel disease and an opportunity to fight back and unite to bring us closer to finding a cure.Everyone is welcome to join in, regardless of age or fitness levels. The day consists of a tombola, cake sale, music, fun and of course, the 2-lap walk around the beautiful Graves park! Our Big Steps of Hope Tribute

Walk to d’feet MND is a family-friendly event. All paths are buggy and wheelchair friendly, and you can even bring your four-legged friends to take part. Every participant will receive a Walk to d’feet MND t-shirt and our exclusive, commemorative 2020 event medal. Can’t make it to Graves Park? Sign up for the Big Steps of Hope virtual walk instead and walk anywhere, any distance and in your own time. To get involved please contact Vicky on bigstepsofhopemnd@outlook.com or via our event website: https://bigstepsofhope.com/Together, let’s take steps to d’feet MND!

Big Steps of Hope Tribute Walk to D’Feet MND 2020

The Motor Neurone Disease AssociationWebsite: www.mndassociation.org Tel: 01604 250505

Registered office: MNDA, Francis Crick House,6 Summerhouse Road, Moulton Park, Northampton NN3 6BJ

MNDA Connect Helpline 0808 802 6262

Committee members 2020Chair: Mel White 01226 764710 symndchair1@yahoo.co.ukBranch Contact: Marlene Bryan 07522 852990 marlene1919@live.co.ukTreasurer: Paul Hebblethwaite (Home) 0114 236 3222 (Work) 0114 268 1441 paulh@haywoodandco.comAssistant Treasurer: Kirsteen Booy (Home) 01709 510701 kirsteen.booy@kcom.comSecretary: Christine Naylor 0114 265 3774 chris222@sky.comCampaigns Contact: VacancyCommunity Engagement Champion: Vacancy Branch Publicity: Joe Allen jgallen4@googlemail.com

Fundraising: Geoff Bland 01226 245811 gbland7@sky.comNewsletter Editor: Christine Naylor 0114 265 3774 chris222@sky.comWebsite: Ann Quinn 077761 91333 mndvisitor@gmail.comKath Groom, Dave Booker, Andy Jaffray, Brian Jackson, Vicky Paeschel, Trevor PeacockArea Support Co-ordinator: Jayne Thompson Telephone no: to be confirmed

Open Meeting Dates Overleaf

South Yorkshire Branch Website: www.mndsouthyorkshire.org

Registered Charity No. 294354

www.mndsouthyorkshire.org

Branch Meeting Dates 2020Meetings 2.00pm – 4.00pm except for Barnsley 1.00pm – 3.00pm

SheffieldTuesday 7th AprilTuesday 14th JulyEvening meeting - 6.00 pm @ Sheffield Botanical GardensTuesday 6th OctoberTuesday 1st December

RotherhamMonday 2nd MarchMonday 1st JuneMonday 7th SeptemberMonday 7th December

DoncasterThursday 23rd AprilThursday 16th JulyThursday 15th October

BarnsleyWednesday 11th MarchWednesday 10th JuneWednesday 9th September