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Leicestershire & Rutland Branch Newsletter April/May 2010 We hope you find this newsletter useful, please read it and pass it on to friends and family to help spread any news. If you have any social or fundraising events coming up please let us know and we can help publicise it both here and through the web site. The more people who know the more people will come! Email: lee@mndaleicester.org.uk If you have any news, views, tips, help, stories or anything you think others might find enjoyable or useful please let us know. If you need any assistance with this there is help available, see numbers on reverse.

www.mndaleicester.org.uk Contents: • • • • • • •

New just giving web site Rutland bike ride Strawberry Tea LOROS Beneficiary Ode to John! Message from the Chair New Treasurer


MESSAGE FROM THE CHAIRMAN It was wonderful to see so many of you at the AGM last month as it always a pleasure to meet up with old friends and say hello to those who have become involved with the branch more recently. This was our 24th AGM which means we are now beginning our 25th year – that in itself will be a cause for celebration next year. As you will know, we had hoped to welcome Mark Todd MP (chair elect of MNDA Board of Trustees) as our guest speaker tonight. He willingly agreed to come but on the understanding that he might be called away on unavoidable parliamentary business. Those of you who were there will know that, sadly, he had to send his apologies because, unfortunately, our AGM clashed with the final Commons budget debate and he was required to vote late that night. Although we had no resignations from the committee this year, John Shuttlewood had decided that, after 20 years, it was time for him to relinquish his role as treasurer but will be staying on the committee to concentrate on some fundraising activities. So, in our guest speaker slot, we entertained ourselves with a celebration of branch fundraising over the last 24 years as an appropriate way of marking John’s long service and the efforts of all those whose fundraising efforts have given him plenty of money to account for! I am pleased to confirm that Angie Parkin has agreed to take on the role of treasurer and was elected as a full member of the branch committee at the AGM. We co-opted Angie onto the committee some months ago so she could see how we work and have a chance to “shadow” John’s treasurer’s role. We are very pleased to welcome her now as a full committee member and at our April committee meeting formally elected her as Branch Treasurer. Angie will be known to many of you as she has been involved in the branch in so many ways. Her energy and enthusiasm for supporting Branch activities is amazing and never waned even through the challenge of caring for her late husband, Wayne. She has managed to garner support from a wide circle of family and friends and has contributed so much to the support of other families similarly affected by MND. Her personal experience of MND, business sense and no nonsense approach to our work means she will, I know, be a very able successor to John. I was pleased to report another very successful year for the Branch. Thanks to our team of volunteer welfare visitors, we have been able to maintain Branch support for people with MND and their families. The multi-disciplinary clinic is now well and Branch volunteer involvement has continued to be appreciated by users and clinicians alike. We continue to be indebted for the support we have received from LOROS, all the clinical staff in the multi disciplinary team, and, of course, for the commitment of our volunteer visitors particularly Isobel and Jenny for their inspirational contribution to this project. We also continue to hold the AGM and Strawberry tea here at LOROS so once again we thank Matron Chris Faulkner and all the staff for allowing us the use of their facilities over the last year. Finally, as ever, I must say a very big thank you to all the committee for all their support and hard work over the last year- there is always so much going on, often behind the scenes, without which the Branch could not exist. Best wishes, Janet McMillan, Chairman, Leicestershire and Rutland Branch


Financial Health Mrs K John Lutterworth & District Round Table Una – Taxis Memory – Stephen Symes Goodman MPS Builders’ Merchants Spearing Waite Solicitors Memory – Trevor Bairstow Memory – Rod Leman Xmas Cards Florist Sundries Memory – Stephen Symes-Goodman Donation – Royal Arch Masons In Memoriam – Trevor Bairstow Sheila Bloor Chris & Phil Marshall Past Carers Group Heather & Muriel – Crafters In Memoriam – Brian Toon Earl Shilton Baptist Church Mrs Bayliss – Cakes Extrordinaire Memory – Carol Sandra Walton Memory – Michael Homes Memory – Colin Robinson Judith Hart – Disco

£100.00 £1500.00 £25.00 £15.00 £46.00 £91.87 £20.00 £427.00 £34.00 £200.00 £10.00 £250.00 £160.00 £100.00 £68.00 £50.00 £190.00 £270.00 £85.00 £43.20 £20.00 £25.00 £20.00 £1400.05

Thanks to all who have been raising funds for this important local support and assistance, especially in tough economic conditions. Well Done !

Just Giving We have now set up an account with Just Giving to enable people to sponsor and donate funds through the internet. You can use this site to give money in respect of events. All funds raised through this site will be given back to local branch from National Office. And there is an easy way to allow gift aid to be applied. Please pass these details on and get giving ! www.justgiving.com/LeicsandRutlandMND


May 9th Rutland Water Cycle Ride As I write this. Rutland Water Cycle Ride. Are you all ready because I’m not! The eternal optimist, that’s me. It’ll be alright on the night, this the memories of my late wife Jac when she was involved in theatre and also all the organising I have done in my lifetime. So, this what I want from you. Someone rang up yesterday and said, “ Don’t worry about me, I know what to do and I’ll send you the money after the event.” I could have kissed them as they were perfect in my plans, they took on the responsibility. So, this is what I don’t ‘want’ from you. a) tell me all your problems as to why something can’t or won’t happen, I want to hear how YOU are going to overcome them! Naturally I am the organiser so I do take my responsibility seriously and if I fail anywhere I take ‘the rap’. And don’t hesitate to phone me if possible BEFORE the event so that I am not bogged down on the day. I used to be an instructor and on everything possible were the words, IF IN DOUBT, ASK! The thing that matters is we raise money to help people affected with MND, all else is superfluous although I hope we all have a good time doing the event. For more info call John Shuttlewood on 0116 251 5496

May I introduce Angela Parkin, Our new Treasurer. Wayne, Angie’s husband died last year of MND but well before that she has been involved with her family in raising money for the Branch. Lee, her son is heavily involved with our Website and Newsletter so as a family they are ‘ace’. Whenever you meet her there is a 99% chance that she is smiling not frowning. She has plenty of experience in money matters so, at last the Treasurer will be competent! We wish her well in her new role and look forward to her participation in Branch activities for a long time. I’m sure that the regime at present will continue in that we always try to say ‘yes’ to requests for help. Angela’s phone number is 0116 267 5030, her postal address for cheques is: 3 Broadgate Close, Birstall LE4 3FA Good Luck Angela! John Shuttlewood

Strawberry Tea On Monday 12th July from 2-4pm at LOROS, Frizelle Suite. Lovely fresh Strawberries and shortbread mmm! Call Jenny for more info 0116 251 5496


Open Gardens On 15th/16th May at Bruntingthorpe, Leicestershire once again the village is holding its open gardens weekend for the village hall funds. John Mattock and Francine will be serving teas and cakes in their garden at Uppens, Church Walk for Motor Neurone Disease. Ruth Johnson will also be having a tombola stall in her garden, Pleasant Cottage also for MND and we look forward to seeing you. Any donations you may have for the tombola would be gratefully appreciated please call Ruth on 0116 247 8279

Indian Evening Cuisine of India, Kelmarsh Avenue, Wigston Monday - 24th May 7.30pm If you are interested in this event which John Mattock is organising please contact him on 0116 247 8409. Tickets cost £15 per head. This is an excellent Indian Buffet Evening not to be missed - but hurry tickets going fast....

Spring Cleaning? If you are having or have had a spring clean and you don't know what to do with your old silk flowers, dried flowers unwanted christmas trimmings Francine Mattock would be grateful of them so she can recycle them to help make her cards and door stops, also if you have any unwanted scraps of material or teddy bears she would also be grateful of these. Please contact Francine on 0116 2478 409.

LOROS & Motor Neurone Disease Association Some of you are probably aware that LOROS has recently built a new extension wing to cater for more single roomed patients. As our relationship has been crucial to the success of both care and fundraising ventures we as a committee wanted to show our support by helping with the massive target that was needed to complete the extension. After unsuccessfully approaching National Office to ask if we could contribute, we found another way to secure funds. An application was made to Mark Masons to show the benefit for people with MND had at LOROS through care and support. It was duly considered and the £20,000 requested was declined, but a £25,000 cheque soon arrived. We will fill in all the gaps in the next newsletter about this fantastic news and Masonic generosity.


Ode to John From the Committee and Supporters of the Leicestershire & Rutland branch of Motor Neurone Disease Association John Shuttlewood, our Treasurer Has decided to resign So we thank him very much For giving us his time. He’s counted all the money He’s balanced every sheet And best of all provides us With laughs each time we meet! Even though he’s been through sadness He’s retained his sense of fun He’s told us lots of stories And we’ve enjoyed each and every one. Out comes the famous flip chart With little anecdotes So good old “Honest John” Certainly gets our votes! For twenty years he’s worked hard For the cause of MND In fact we think the Queen Should give him an OBE!! But we know he won’t enjoy it If we make a fuss So thank you once again John We’re glad you’ll still be one of us.


Friends & Family Meetings Held at 7 Snow Hill, Leicester for all those currently caring for or involved with people living with Motor Neurone Disease. Come to meet like-minded folk for a chat and get together. Outreach nurses and committee members on hand for a quiet chat too. For more information please call Jenny Holmes-Shuttlewood on 0116 251 5496 Starting 7.30pm on Wednesday May 12th, June 16th and July 14th. Please do let Jenny know if you need any assistance with transport. TRIBUTES TO JOHN SHUTTLEWOOD So, after 20 years, John is handing over the account book to someone else. What can I say about John’s contribution as Treasurer over all that time? He has been much more than treasurer as we all know and we are so pleased that he will continue to be actively involved as a committee member. I first met John all those years ago (1989 I think) on the building cum caravan site that was to become 7 Snow Hill. Peter Mann, who sadly died last year, was our branch secretary in those days and our current treasurer, Sid Roberts had reluctantly had to resign due to his wife’s illness. Peter knew John through the Little Theatre and put me in touch with him and his late wife Jac. At that time we were trying to hold the branch together with a very tiny group of active committee members. I couldn’t believe our luck in finding someone like John to take on the Treasurer role. I had been telling everyone - don’t worry, I’m sure someone will turn up ... and John did. John has not just been the Treasurer – he’s also a great PR asset and his talks about MND have inspired many people to do something for our cause whether it be raising money or helping us in some other way. His networking skills are legendary and he has such a wonderful way with words as well as figures. He takes great pride in sending his own uniquely crafted thank you letters to fundraisers (great and small) and we all appreciate his wicked sense of humour. He will always stand his corner against obstructive bureaucracy because, above all, what he really cares about is making sure that people affected by MND get the support they need – and he will always make the case for spending the money where it’s needed. We are all immensely grateful to John for everything he’s done as Treasurer over the years. He really was the answer to my prayers back in 1989 and I can only say that his contribution to the Branch has been truly exceptional. We now look forward to his latest MND related venture – the annual Rutland Water bike ride. Having enjoyed John’s unique approach to the presentation of our branch accounts for several years, Sandra Yorke, one of our branch supporters, was inspired to write a delightful “Ode to John” which we thought we’d share with you all.


Local Local Branch Contact Details: President / Chair

Janet McMillan

01509 880 577

Vice Chair Branch Contact Secretary Treasurer Publicity Officer Trust Officer Mail Adminstrator Committee Member Committee Member Committee Member Association Visitor Association Visitor Association Visitor Association Visitor Association Visitor Association Visitor

Ruth Johnson Isobel Jenkins * Jenny Holmes-Shuttlewood * Angela Parkin Lee Parkin Paul Wilcock * John Denoon John Shuttlewood John Mattock Benny Rossi Ann Kirkpatrick Alison Smith Helen Bennett Angela Saunders Ann Brennan Mohamed Sayed

0116 247 8279 01455 283 005 0116 251 5496 0116 267 5030 07930 490 934 0116 267 7970 0116 267 4040 0116 251 5496 0116 247 8409

01455 209 405 01572 755 469 0116 259 3945

* Association Visitor

Other Useful Contact Details: Regional Care Development Advisor – Rachel Boothman 0845 375 1830 Email: rachel.boothman@mndassociation.org MND Association Helpline – charged at local rate Open 9.00am – 5.00pm & 7.00pm – 10.30pm

08457 626 262

National Office: Motor Neurone Disease Association P.O. Box 246 Northampton NN1 2PR Newsletter Contact – Lee Parkin Email: lee@mndaleicester.org.uk

07930 490 934

Registered charity 294354

www.mndaleicester.org.uk

Sponsored by Greenshires Group

www.greenshires.com

MNDA April-May 2010  

Newsletter: April-May 2010

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