Local

Local Branch Contact Details: President / Chair Janet McMillan 01509 880 577 Vice Chair Ruth Johnson 0116 247 8279 Branch Contact Isobel Jenkins * 01455 283 005 Secretary Jenny Holmes-Shuttlewood * 0116 251 5496 Treasurer Angela Parkin 0116 267 5030 Publicity Officer Lee Parkin 07930 490 934 Trust Officer Paul Wilcock * 0116 267 7970 Mail Administrator John Denoon 0116 267 4040 Committee Member John Shuttlewood 0116 251 5496 Committee Member John Mattock 0116 247 8409 Committee Member Benny Rossi Association Visitor Ann Kirkpatrick Association Visitor Alison Smith Association Visitor Helen Bennett 01455 209 405 Association Visitor Angela Saunders 01572 755 469 Association Visitor Ann Brennan 0116 259 3945 Association Visitor Mohamed Sayed * 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 08457 626 262 Open 9.00am – 5.00pm & 7.00pm – 10.30pm National Office: Motor Neurone Disease Association P.O. Box 246 Northampton NN1 2PR Newsletter Contact – Lee Parkin 07930 490 934 Email: lee@mndaleicester.org.uk Registered charity 294354 www.mndaleicester.org.uk Sponsored by Greenshires Group www.greenshires.com

Leicestershire & Rutland Branch Newsletter December 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. 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:

• Palmers Xmas Gathering • Friends & Family Forum • OSCARR Award! • Financial Health • Letter from the Chair • Past Carer’s Meeting • Physio Study • Desperately Seeking Secretary

MESSAGE FROM THE CHAIRMAN Dear Friends Last Christmas I was thrilled to tell you about the BUPA award for clinical excellence which was awarded to the Leicestershire and Rutland MND palliative and supportive care pathway project. This year I am delighted to tell you that the Leicestershire and Rutland Branch of MNDA has been awarded an OSCARR! No, I haven’t spelt it wrong and we haven’t been starring in any films.... This is the Association’s way of recognising outstanding practice in local branches and our branch has won the 2010 OSCARR for Splendid Support. (It actually stands for Outstanding Support, Care, Awareness and Revenue Raising.) I am sure you will want to join me in congratulating all the branch volunteer visitors and others who have contributed to this achievement. So much of what they do goes unseen so I am really pleased that their outstanding care and commitment have been recognised by the Association. Have you ever thought about helping the Branch but weren’t sure how? If so we’d love to hear from you. As many of you will know, Jenny Holmes-Shuttlewood is a key member of our volunteer visitor team, regularly attending the multi-disciplinary clinic and organising much of the care and support activities of the Branch. On top of that she is also branch secretary! We now feel it would be more appropriate for her to concentrate on her care and support role so we are urgently seeking someone to take on her secretarial duties. We have included a summary of what this involves elsewhere in the newsletter so please have a look and contact me or Jenny if you think you might be able to help. Next year will be the 25 Anniversary of the Leicestershire and Rutland Branch so we’re hoping to arrange one or two special events to celebrate. We would particularly like to meet up with people who were involved in the early days of the branch so the committee are looking at possible venues for a 25th birthday tea. If you have any ideas or suggestions, please let us know. On a Christmassy theme, the Lutterworth Round Table will be taking the Santa Sleigh around some of the nearby villages on 19 and 20 December. They will be collecting for MNDA as well as the Air Ambulance so if you live in that area, do support them! Finally, on behalf of the branch committee and our OSCARR winning volunteer visitors, may I take this opportunity to wish you a peaceful Christmas and to send you our very best wishes for the New Year. Best wishes Janet McMillan Chairman, Leicestershire and Rutland Branch

MND Study for Physiotherapists A very successful Study Afternoon was held on Sept 29th 2010 at LOROS. Nearly 40 physiotherapists from all over our region attended and heard updates on Motor Neurone Disease from Dr Peter Critchley, Dr Luke Feathers, Jo Smith (NIPV specialist) and specialist nurse Jane Glover. The afternoon was arranged to allow physios to discuss their problems and concerns when dealing with the effects of MND. LOROS physios Kathryn Rignall and Sally Jennings hosted debates on providing comfortable neck supports and providing exercise programmes for MND sufferers. Kathryn organised the afternoon with support from both LOROS and the MNDA which allowed the session to be provided free of charge. Following on from the success of the afternoon, the Leicestershire and Rutland MND Palliative and Supportive Care pathway project is launching an education sub-group to consider future development opportunities for health professionals. Rachel Boothman (MNDA Regional Care Development Adviser) chaired the afternoon, refreshments were generously donated by Sally Cozens of Resmed.

Past Carer’s Meeting It’s been a while since we gathered together, so we’ll all have plenty to say. So if you fancy a yarn put his date in your diary. Thursday 27th January 2011 at 7.30pm meeting at the Quorndon Fox, Leicester Road, Quorn. These dates are for people who have been involved in the care of people with MND who want to get together, get things off their chest or simply get out! A chance to stay in touch with people you have met in an informal setting. Please call Angela Parkin on 0116 267 5030 if you want to attend or for more information.

Palmers Xmas Gathering

Pictured Ann Brennan – Winner of the raffle star prize, kindly donated by Palmers Garden Centre, John Mattock and Sandy – maker and taker of the lovely cakes., Isobel Jenkins, Rachel Boothman and Suzanne Curtis of MND Association, Jenny Holmes-Shuttlewood and Helen Bennett – presenting the OSCARR Award. Angela Parkin, Helen Bennett and Liz of Palmers Garden Centre – helping with the raffle. Special thanks to the Loughborough Baptist Church choir who treated us with a beautiful Christmas carol performance. Special thanks too go to Liz, Sandy and Ian of Palmers for their hospitality and superb buffet. Many people came and enjoyed the evening with a chance to start celebrating this most wonderful time of the year. On the night the Leics & Rutland branch was presented with the OSCARR award for splendid Support, see chairman’s letter.

WANTED – BRANCH SECRETARY! Do you:

• have a couple of hours to spare each week? • regular access to a computer and telephone? • basic clerical, email, internet and word processing skills?

Could you:

• attend branch committee meetings? (6 per year) • deal with general correspondence on behalf of the branch? • liaise with other committee members and national office? • maintain branch membership and mailing lists?

If so - we need you! We want to help Jenny Holmes-Shuttlewood, our current branch secretary, focus her time and skills on welfare and support activities so would like to relieve her of these secretarial tasks as soon as possible. Jenny says the Secretary’s role is not difficult as much of the communication is via email and committee members generally deal with their own correspondence. Some support for meetings may be needed but this is minimal as Janet McMillan organises the AGM and agendas and Benny Rossi takes the minutes. So, if you are interested in working with us to support the branch administration, do contact Jenny on 0116 251 5496 who would be pleased to tell you more.

Financial Health A list of monies collected in the recent period – thanks to all involved! Donation – Peg Voss £10.00 Memory – Stephen Symes-Goodman £30.00 Collection Box – John Denoon £18.75 Donation – Vickie Ryall £10.00 Charnwood Hike – Paul Willcock £200.00 Rutland Water £1506.50 Collection Box – JHS £5.00 In memoriam – Pete Brown £900.00 Syston & District Darts League £800.00 Donation – Paul Sarson £20.00 Memory – Pete Brown £10.00 Chinese Dinner – John Mattock £720.00 Coffee Morning – Jo Joyce £86.71 Xmas Cards £145.27 Donation – Xmas Cards £23.92 Raffle – Foxton £114.00 Diamond Wedding – Roy & Muriel Gayton £80.00 Memory – Paul Jennings £50.00 Donation – Irene Walker £15.00 Memory – Nigel Buckley – Loros Walk £50.00 Collection Box £36.69 Donation – Leics. Freemasons £250.00 Coffee Morning – Mrs Berry £30.00 Market Bosworth Tennis Club £106.00 Memory – Phil Malkin £600.01 Book Sale :o) – Angela Parkin £50.00 Ann Palmer Allotment £32.00 Rotary – Ashby de la Zouch £500.00

MND  Association,  AGM  &  Conference   As a newly diagnosed sufferer now living with MND, the opportunity to attend an AGM that was so conveniently close to Leicester was too good to miss. I live in Kirby Muxloe so the journey to Nottingham Belfry Hotel only took 40 mins. Following a trouble free drive north on the M1, the hotel was easy to find after leaving the motorway. Parking was conveniently near to the entrance and the modern hotel looked bright and accommodating. Inside the foyer there were many MNDA staff and helpers who promptly registered my arrival and guided me to the refreshment area where a selection of hot and cold drinks was available. Within this lobby there were also several other displays, so after a very welcome mug of coffee I looked around the various trade stands offering useful aids and appliances for MND sufferers, and MNDA specialist stands. At 10.30am we filed into the conference hall and after a short wait for latecomers the meeting commenced. Alan Graham, the retiring chairman delivered a first rate summary of the past year recounting the progress the association had made, and a concise review of the important changes and improvements over the last thirty years that have brought the organization to its present high standing. The Report and Accounts were approved after several good humoured questions, and Mark Todd, the new chairman was introduced. Lunch was next, with a very good choice of dishes hot and cold, and I was quickly joined by other friendly delegates. The lunch break rapidly passed as we chatted and exchanged experiences, then at 1.30pm we returned to the hall to hear the Keynote speaker, Professor Nigel Leigh of Kings College Hospital, London. He gave us a very interesting retrospective of the early stages and subsequent developments in research over the past twenty years. Then with the help of slides he outlined the complex process of searching for, and identifying genes that might increase susceptibility to MND, but he was also able to demonstrate to us the huge increase in knowledge and understanding of this disease that surely will lead to successful treatments in time. Many questions followed and my only disappointment as a MND sufferer was that the professor was not able to announce a breakthrough in treatment that afternoon! We then split into groups to attend workshop sessions dealing with four separate issues. I joined the Research session which proved to be challenging and quite interactive, from which I learned a lot. Then it was time for another cup of tea, after which we assembled in the hall for the winding up addresses by Kirstine Knox and Jean Waters. I left the Belfry hotel after a stimulating and enjoyable day, heartened by the commitment and friendliness of everyone involved, and knowing that people living with MND can depend upon the support they will receive from the MNDA and its many volunteers. Frederick Colwell.      

.

Season’s Greetings from Jo & Jane Who hides in a bakery at Christmas?..................................A mince spy!! Why would you ask a mushroom to a Christmas party?…………………………....he's a fun guy to be with!! What is Santa's favourite pizza?...one that's deep pan crisp and even!! What's white and goes up?..................................A confused snowflake!! How do snowmen get around?..................................They ride an icicle!! And finally What did Adam say on the night before Christmas?…………………….Its Christmas Eve!! BUM BUM! We wish to send to everyone our very best wishes at Christmas and for the New year. With our love and thoughts

Jo and Jane. xxxxxxxxx

Unveiling  our  Online  Forum  

We are delighted to announce the launch of our new online forum – a safe place for people affected by MND to share experiences and support each other with the challenges of living with the disease. The forum http:// forum.mndassociation.org – went live on 8 December and has been developed as a direct response to requests from people living with MND who recognise the benefits online forums bring. It will offer an alternative way of people living with MND and their carers seeking support and interacting with each other without having to leave their home, reducing some of the isolation MND can bring. We are confident our new forum will provide an important addition to our website and will complement our MND Connect advisory telephone and email services and the information and branch support provided locally. It will be co-ordinated by Robyn Copley-Hirst in our MND Connect team, who will in due course be supported by a team of volunteer moderators. The moderators will regularly visit the site during the day and evening to ensure the content is appropriate. Kaye Stevens, Care Information Coordinator said: “The online forum is primarily a key communication tool for people affected by MND, but will also become an important influence for the development of care information. It will help to highlight key areas of interest and concern, which will feed into the continuous improvement and expansion of our care information provision. “It will be very interesting to see what trends emerge and how we might be able to respond with more immediacy as an organisation - both directly and through our future publications.” People will need to register in order to contribute to the forum, but the registration process is relatively straightforward and there are separate discussion areas for people to introduce themselves, to discuss life with MND, and for carers. There is also an‘off topic’ area for non-MND related discussions and a section for news and announcements from the Association. Registered users will also have the opportunity to send private messages to each other if they wish.

.

   

Are you an Incurable Optimist?

Pictured opposite is just one of the portraits painted by Patrick Joyce, one of the 100 he has pledged to paint. Patrick wants to raise awareness by putting paint to canvas and capturing the images of 100 faces of Incurable Optimism. Each face is involved in the fight against MND, each face has Patrick’s take on their connection and are all brilliant. “I’m determined to use what’s left of my life and my diminishing artistic skill to encourage others to do something optimistic every day. MND may be incurable but I am an incurable optimist. I know that through optimism we will find the cure to MND. Before my diagnosis of motor neurone disease, I was an artist. Now the disease has affected my arms and hands and I am finding it harder to paint. I want to continue to work for as long as possible and use both my work and my story to help the Motor Neurone Disease Association create a movement of incurable optimism. This is why I’ve set myself a challenge to draw the portraits of 100 incurable optimists before I lose the ability to paint forever.” To see more of Patrick’s artwork and to find out more patricktheoptimist.org 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 are on hand for a quiet chat too. These meeting have helped many people in lots of different ways over the years. Knowing only too well that each person with MND has completely different experiences and requirements, meeting people and talking about things can sometimes help find solutions and ease problems. One carer said of these meetings, “I find the welcome so warm and the level of support available is very well informed and so valuable. I would definitely recommend that anyone caring for a person with MND should come along.” For information please call Jenny Holmes-Shuttlewood on 0116 251 5496. Starting 7.30pm on Wednesday 15th December, January 19th February 16th. Please do let Jenny know if you need any assistance with transport.

Are you an Incurable Optimist?

Pictured opposite is just one of the portraits painted by Patrick Joyce, one of the 100 he has pledged to paint. Patrick wants to raise awareness by putting paint to canvas and capturing the images of 100 faces of Incurable Optimism. Each face is involved in the fight against MND, each face has Patrick’s take on their connection and are all brilliant. “I’m determined to use what’s left of my life and my diminishing artistic skill to encourage others to do something optimistic every day. MND may be incurable but I am an incurable optimist. I know that through optimism we will find the cure to MND. Before my diagnosis of motor neurone disease, I was an artist. Now the disease has affected my arms and hands and I am finding it harder to paint. I want to continue to work for as long as possible and use both my work and my story to help the Motor Neurone Disease Association create a movement of incurable optimism. This is why I’ve set myself a challenge to draw the portraits of 100 incurable optimists before I lose the ability to paint forever.” To see more of Patrick’s artwork and to find out more patricktheoptimist.org 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 are on hand for a quiet chat too. These meeting have helped many people in lots of different ways over the years. Knowing only too well that each person with MND has completely different experiences and requirements, meeting people and talking about things can sometimes help find solutions and ease problems. One carer said of these meetings, “I find the welcome so warm and the level of support available is very well informed and so valuable. I would definitely recommend that anyone caring for a person with MND should come along.” For information please call Jenny Holmes-Shuttlewood on 0116 251 5496. Starting 7.30pm on Wednesday 15th December, January 19th February 16th. Please do let Jenny know if you need any assistance with transport.

MESSAGE FROM THE CHAIRMAN Dear Friends Last Christmas I was thrilled to tell you about the BUPA award for clinical excellence which was awarded to the Leicestershire and Rutland MND palliative and supportive care pathway project. This year I am delighted to tell you that the Leicestershire and Rutland Branch of MNDA has been awarded an OSCARR! No, I haven’t spelt it wrong and we haven’t been starring in any films.... This is the Association’s way of recognising outstanding practice in local branches and our branch has won the 2010 OSCARR for Splendid Support. (It actually stands for Outstanding Support, Care, Awareness and Revenue Raising.) I am sure you will want to join me in congratulating all the branch volunteer visitors and others who have contributed to this achievement. So much of what they do goes unseen so I am really pleased that their outstanding care and commitment have been recognised by the Association. Have you ever thought about helping the Branch but weren’t sure how? If so we’d love to hear from you. As many of you will know, Jenny Holmes-Shuttlewood is a key member of our volunteer visitor team, regularly attending the multi-disciplinary clinic and organising much of the care and support activities of the Branch. On top of that she is also branch secretary! We now feel it would be more appropriate for her to concentrate on her care and support role so we are urgently seeking someone to take on her secretarial duties. We have included a summary of what this involves elsewhere in the newsletter so please have a look and contact me or Jenny if you think you might be able to help. Next year will be the 25 Anniversary of the Leicestershire and Rutland Branch so we’re hoping to arrange one or two special events to celebrate. We would particularly like to meet up with people who were involved in the early days of the branch so the committee are looking at possible venues for a 25th birthday tea. If you have any ideas or suggestions, please let us know. On a Christmassy theme, the Lutterworth Round Table will be taking the Santa Sleigh around some of the nearby villages on 19 and 20 December. They will be collecting for MNDA as well as the Air Ambulance so if you live in that area, do support them! Finally, on behalf of the branch committee and our OSCARR winning volunteer visitors, may I take this opportunity to wish you a peaceful Christmas and to send you our very best wishes for the New Year. Best wishes Janet McMillan Chairman, Leicestershire and Rutland Branch

MND Study for Physiotherapists A very successful Study Afternoon was held on Sept 29th 2010 at LOROS. Nearly 40 physiotherapists from all over our region attended and heard updates on Motor Neurone Disease from Dr Peter Critchley, Dr Luke Feathers, Jo Smith (NIPV specialist) and specialist nurse Jane Glover. The afternoon was arranged to allow physios to discuss their problems and concerns when dealing with the effects of MND. LOROS physios Kathryn Rignall and Sally Jennings hosted debates on providing comfortable neck supports and providing exercise programmes for MND sufferers. Kathryn organised the afternoon with support from both LOROS and the MNDA which allowed the session to be provided free of charge. Following on from the success of the afternoon, the Leicestershire and Rutland MND Palliative and Supportive Care pathway project is launching an education sub-group to consider future development opportunities for health professionals. Rachel Boothman (MNDA Regional Care Development Adviser) chaired the afternoon, refreshments were generously donated by Sally Cozens of Resmed.

Past Carer’s Meeting It’s been a while since we gathered together, so we’ll all have plenty to say. So if you fancy a yarn put his date in your diary. Thursday 27th January 2011 at 7.30pm meeting at the Quorndon Fox, Leicester Road, Quorn. These dates are for people who have been involved in the care of people with MND who want to get together, get things off their chest or simply get out! A chance to stay in touch with people you have met in an informal setting. Please call Angela Parkin on 0116 267 5030 if you want to attend or for more information.

Financial Health A list of monies collected in the recent period – thanks to all involved! Donation – Peg Voss £10.00 Memory – Stephen Symes-Goodman £30.00 Collection Box – John Denoon £18.75 Donation – Vickie Ryall £10.00 Charnwood Hike – Paul Willcock £200.00 Rutland Water £1506.50 Collection Box – JHS £5.00 In memoriam – Pete Brown £900.00 Syston & District Darts League £800.00 Donation – Paul Sarson £20.00 Memory – Pete Brown £10.00 Chinese Dinner – John Mattock £720.00 Coffee Morning – Jo Joyce £86.71 Xmas Cards £145.27 Donation – Xmas Cards £23.92 Raffle – Foxton £114.00 Diamond Wedding – Roy & Muriel Gayton £80.00 Memory – Paul Jennings £50.00 Donation – Irene Walker £15.00 Memory – Nigel Buckley – Loros Walk £50.00 Collection Box £36.69 Donation – Leics. Freemasons £250.00 Coffee Morning – Mrs Berry £30.00 Market Bosworth Tennis Club £106.00 Memory – Phil Malkin £600.01 Book Sale :o) – Angela Parkin £50.00 Ann Palmer Allotment £32.00 Rotary – Ashby de la Zouch £500.00

MND  Association,  AGM  &  Conference   As a newly diagnosed sufferer now living with MND, the opportunity to attend an AGM that was so conveniently close to Leicester was too good to miss. I live in Kirby Muxloe so the journey to Nottingham Belfry Hotel only took 40 mins. Following a trouble free drive north on the M1, the hotel was easy to find after leaving the motorway. Parking was conveniently near to the entrance and the modern hotel looked bright and accommodating. Inside the foyer there were many MNDA staff and helpers who promptly registered my arrival and guided me to the refreshment area where a selection of hot and cold drinks was available. Within this lobby there were also several other displays, so after a very welcome mug of coffee I looked around the various trade stands offering useful aids and appliances for MND sufferers, and MNDA specialist stands. At 10.30am we filed into the conference hall and after a short wait for latecomers the meeting commenced. Alan Graham, the retiring chairman delivered a first rate summary of the past year recounting the progress the association had made, and a concise review of the important changes and improvements over the last thirty years that have brought the organization to its present high standing. The Report and Accounts were approved after several good humoured questions, and Mark Todd, the new chairman was introduced. Lunch was next, with a very good choice of dishes hot and cold, and I was quickly joined by other friendly delegates. The lunch break rapidly passed as we chatted and exchanged experiences, then at 1.30pm we returned to the hall to hear the Keynote speaker, Professor Nigel Leigh of Kings College Hospital, London. He gave us a very interesting retrospective of the early stages and subsequent developments in research over the past twenty years. Then with the help of slides he outlined the complex process of searching for, and identifying genes that might increase susceptibility to MND, but he was also able to demonstrate to us the huge increase in knowledge and understanding of this disease that surely will lead to successful treatments in time. Many questions followed and my only disappointment as a MND sufferer was that the professor was not able to announce a breakthrough in treatment that afternoon! We then split into groups to attend workshop sessions dealing with four separate issues. I joined the Research session which proved to be challenging and quite interactive, from which I learned a lot. Then it was time for another cup of tea, after which we assembled in the hall for the winding up addresses by Kirstine Knox and Jean Waters. I left the Belfry hotel after a stimulating and enjoyable day, heartened by the commitment and friendliness of everyone involved, and knowing that people living with MND can depend upon the support they will receive from the MNDA and its many volunteers. Frederick Colwell.      

.

Palmers Xmas Gathering

Pictured Ann Brennan – Winner of the raffle star prize, kindly donated by Palmers Garden Centre, John Mattock and Sandy – maker and taker of the lovely cakes., Isobel Jenkins, Rachel Boothman and Suzanne Curtis of MND Association, Jenny Holmes-Shuttlewood and Helen Bennett – presenting the OSCARR Award. Angela Parkin, Helen Bennett and Liz of Palmers Garden Centre – helping with the raffle. Special thanks to the Loughborough Baptist Church choir who treated us with a beautiful Christmas carol performance. Special thanks too go to Liz, Sandy and Ian of Palmers for their hospitality and superb buffet. Many people came and enjoyed the evening with a chance to start celebrating this most wonderful time of the year. On the night the Leics & Rutland branch was presented with the OSCARR award for splendid Support, see chairman’s letter.

WANTED – BRANCH SECRETARY! Do you:

• have a couple of hours to spare each week? • regular access to a computer and telephone? • basic clerical, email, internet and word processing skills?

Could you:

• attend branch committee meetings? (6 per year) • deal with general correspondence on behalf of the branch? • liaise with other committee members and national office? • maintain branch membership and mailing lists?

If so - we need you! We want to help Jenny Holmes-Shuttlewood, our current branch secretary, focus her time and skills on welfare and support activities so would like to relieve her of these secretarial tasks as soon as possible. Jenny says the Secretary’s role is not difficult as much of the communication is via email and committee members generally deal with their own correspondence. Some support for meetings may be needed but this is minimal as Janet McMillan organises the AGM and agendas and Benny Rossi takes the minutes. So, if you are interested in working with us to support the branch administration, do contact Jenny on 0116 251 5496 who would be pleased to tell you more.

Season’s Greetings from Jo & Jane Who hides in a bakery at Christmas?..................................A mince spy!! Why would you ask a mushroom to a Christmas party?…………………………....he's a fun guy to be with!! What is Santa's favourite pizza?...one that's deep pan crisp and even!! What's white and goes up?..................................A confused snowflake!! How do snowmen get around?..................................They ride an icicle!! And finally What did Adam say on the night before Christmas?…………………….Its Christmas Eve!! BUM BUM! We wish to send to everyone our very best wishes at Christmas and for the New year. With our love and thoughts

Jo and Jane. xxxxxxxxx

Unveiling  our  Online  Forum  

We are delighted to announce the launch of our new online forum – a safe place for people affected by MND to share experiences and support each other with the challenges of living with the disease. The forum http:// forum.mndassociation.org – went live on 8 December and has been developed as a direct response to requests from people living with MND who recognise the benefits online forums bring. It will offer an alternative way of people living with MND and their carers seeking support and interacting with each other without having to leave their home, reducing some of the isolation MND can bring. We are confident our new forum will provide an important addition to our website and will complement our MND Connect advisory telephone and email services and the information and branch support provided locally. It will be co-ordinated by Robyn Copley-Hirst in our MND Connect team, who will in due course be supported by a team of volunteer moderators. The moderators will regularly visit the site during the day and evening to ensure the content is appropriate. Kaye Stevens, Care Information Coordinator said: “The online forum is primarily a key communication tool for people affected by MND, but will also become an important influence for the development of care information. It will help to highlight key areas of interest and concern, which will feed into the continuous improvement and expansion of our care information provision. “It will be very interesting to see what trends emerge and how we might be able to respond with more immediacy as an organisation - both directly and through our future publications.” People will need to register in order to contribute to the forum, but the registration process is relatively straightforward and there are separate discussion areas for people to introduce themselves, to discuss life with MND, and for carers. There is also an‘off topic’ area for non-MND related discussions and a section for news and announcements from the Association. Registered users will also have the opportunity to send private messages to each other if they wish.

.

   

Local

Local Branch Contact Details: President / Chair Janet McMillan 01509 880 577 Vice Chair Ruth Johnson 0116 247 8279 Branch Contact Isobel Jenkins * 01455 283 005 Secretary Jenny Holmes-Shuttlewood * 0116 251 5496 Treasurer Angela Parkin 0116 267 5030 Publicity Officer Lee Parkin 07930 490 934 Trust Officer Paul Wilcock * 0116 267 7970 Mail Administrator John Denoon 0116 267 4040 Committee Member John Shuttlewood 0116 251 5496 Committee Member John Mattock 0116 247 8409 Committee Member Benny Rossi Association Visitor Ann Kirkpatrick Association Visitor Alison Smith Association Visitor Helen Bennett 01455 209 405 Association Visitor Angela Saunders 01572 755 469 Association Visitor Ann Brennan 0116 259 3945 Association Visitor Mohamed Sayed * 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 08457 626 262 Open 9.00am – 5.00pm & 7.00pm – 10.30pm National Office: Motor Neurone Disease Association P.O. Box 246 Northampton NN1 2PR Newsletter Contact – Lee Parkin 07930 490 934 Email: lee@mndaleicester.org.uk Registered charity 294354 www.mndaleicester.org.uk Sponsored by Greenshires Group www.greenshires.com

Leicestershire & Rutland Branch Newsletter December 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. 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:

• Palmers Xmas Gathering • Friends & Family Forum • OSCARR Award! • Financial Health • Letter from the Chair • Past Carer’s Meeting • Physio Study • Desperately Seeking Secretary