Oxfordshire Branch News

Wheelchair accessible vehicle hire

Dear MNDA Oxford

We thought your Members might be interested to know about a new Hire service for wheelchair accessible vehicles which has recently started up in the Thames Valley . There is nothing else like it in your area. We are based in Oxfordshire & West Berks and can offer a collection & delivery service if required.

Vehicles can be hired for a day, weekend, a week or even longer. Very useful for days out, holidays or even when waiting for a new vehicle to arrive. Charges are from £50 per day plus £10 per day per driver for insurance, plus VAT although this can usually be covered by a VAT Exemption Form.

We can offer anything from a small single wheelchair vehicle right up to an accessible minibus. We also have vehicles for disabled drivers, with automatic and hand-controls.

I would be grateful if you could let you Members and supporters know about us. If you need any further information, please do not hesitate to contact me.

With best regards

Linda Ling
Accessible Motor Company
01865 300 361
07823 320879
www.amcwav.com

Oxfordshire Branch MNDA Annual General Meeting 2011

Annual General Meetings allow us to look back over the year and reflect on what has been achieved. The 2011 AGM looked at not only what has been happening locally but also nationally because our keynote speaker was Dr Kirstine Knox, Chief Executive of the Motor Neurone Disease Association, who spoke about some of the changes that have taken place during her five years in office.

The opening address by our Chairman, David Cairns, reminded us how much the group had done during the year. David said that he felt he was still on a steep learning curve when it came to MND and the work of the branch and the many who contribute to it. Fundraising is a vital element of the work of the branch but the contribution of volunteers goes beyond that: volunteers give of themselves, carrying out roles which are largely new to them and excelling in what they achieve.

He mentioned the way that Jane Street has so successfully taken on producing an excellent branch newsletter; the number of enjoyable Friends and Family meetings that have been held and the attendance by Michael and Jane Wenham and others at a reception at the House of Commons to launch the national strategy for MND.

David drew attention to the invaluable service provided by the Association Visitors and their close working with the deeply appreciated Oxford Care Centre. Barbara Farrer, a long standing AV has now resigned from the role but continues to support the branch by raising funds and persuading others to do the same.

He said that Joyce Prince has been confirmed as a Branch Patron in recognition of the years of continuing support she has given. David thanked Pirminder Mann for his sterling work in running the branch website so well and welcomed Paulina Bravo as the new branch treasurer, replacing Tim Kennedy who remains a valued committee member.

Fundraising is key to the work of the branch and this year David was pleased to thank in person two teams who had run half marathons to raise money for the branch to support people living with MND. The FAST team ran the Great North Run in memory of family members with MND. They raised £2,800 to buy a Cough Assist machine which makes it easier for people living with MND to breathe. Team Diddy ran the Reading half marathon and raised £5,157 for branch funds following the diagnosis with MND of their mother. The meeting applauded the two teams for their extraordinary efforts.

David concluded his report by recommending those who have not yet been to visit the Natural History Museum in Oxford to see the exhibition by Patrick Joyce, The Incurable Optimist. It is a demonstration of the power of the human spirit in the face of MND, both of those living with the disease and their families and those seeking to find successful treatments for the disease.

Paulina Bravo presented her first report as Branch Treasurer. She explained that the branch derives 47% of its income from donations and 30% from fundraising. The total income is £15,994.30.

Of branch expenditure, in an increasingly difficult economic climate, 53% is given to patient care in Oxfordshire and 35% to the MNDA national office to support the provision of care, equipment and research. Total expenditure is £26,698.16. The deficit in income and expenditure means that the branch has available at 1 February 2011 funds of £9,465.84 plus restricted funds of £2,395.00.

Paulina noted the financial challenge for the year ahead and expressed her certainty that the branch can meet it. The accounts had been audited pro bono by McIntyre Hudson and Paulina recorded the branch's thanks for this. The meeting agreed to accept the accounts and also to re-appoint McIntyre Hudson as auditors.

The meeting then nominated and elected of the officer bearers and committee members of the Oxfordshire MNDA Branch. They are: Chair: David Cairns; Deputy Chair: Lynda Wigley; Treasurer: Paulina Bravo; Committee: Marilyn Hamblin; John Lay; Anne Silk; Jane Street; Tim Kennedy; Lesley Ogden.

Lesley Ogden continues as Secretary. David thanked her for organising the AGM and for her continuing passion for and commitment to the cause of MND.

The afternoon session began with Professor Colin Blakemore FRS, Branch President and President of the national MNDA, welcoming Kirstine Knox, the Chief Executive of the MNDA. He said that both the branch and the national organisation are going from strength to strength. He said that Kirstine Knox was the inspiration and drive behind many of the Association's successes. She had put the Association on the map with the government, with researchers as well as with families and people living with MND.

Kirstine Knox began her talk by paying tribute to the inspiration she derives from the way people living with MND and their families face the disease and also from the high level of support given by volunteers to the MNDA and its work. The Association had been started 30 years ago by three families affected by MND who had discovered that the NHS and social services were not equipped to deal with a dreadful disease affecting relatively few people. Knowledge levels about the disease were markedly low. The MNDA then and now fills a huge gap - it is not an 'add-on' charity, and the gap it fills is widening with the recession.

Thirty years ago the aims of the new Association were identified as • the need to promote science and research into MND and • the need to promote better care for people living with MND.

Those aims remain the same. The MNDA still seeks to raise funds to promote scientific research into the causes of MND so that, even if no outright cure is found, good treatments can be developed. The MNDA still aims to ensure better care and support for individuals and their families by providing help and also by educating professionals who provide services, and by raising public and political awareness of the disease and its devastating impact.

Research: Five years ago the MNDA Trustees took the decision to aim for an extra £15m to be put into research into MND, which attracts far less than research into, for instance, cancer or heart problems. The move gathered support, including that of the Medical Research Council, and money. This primed a wider interest in MND research and a leap forward in the genetic understanding of the disease. The surge in interest and in research is evidenced in a concomitant rise in the number of publications in MND research.

Kirstine outlined key areas of research:
1. Diagnostic tests to facilitate early diagnosis and earlier treatment to reduce the damage. This is the focus of Dr Martin Turner's work at Oxford.
2. Effective drug treatment. The stem cell research programme in Edinburgh, part of an international project, is trying to create a laboratory model for testing drugs.
3. Research into the health care of people with MND, for example:
• Non-invasive ventilation. This is available in Oxford but not across the country. The National Institute for Health and Clinical Excellence (NICE) has now produced clinical guidelines.
• The MNDA is jointly funding a trial for diaphragm pacing to support breathing.
• Nutritional support, like PEG feeding, which is available in Oxford but not elsewhere. Kirstine noted that new centres of research excellence are emerging in Oxford and Edinburgh. The MNDA is helping to fund a chair in the microbiology of MND.

Care, Support and Information: The MNDA funds and supports 19 Care Centres; a Helpline which is also open to clinicians; provides equipment; educates professionals; influences service provision and helps manage complex cases.

National Office has recorded a 130% increase in demand for its direct services. This is explained by
• the increase in the numbers of people with MND;
• raised expectations of services amongst people with MND and their carers;
• the retraction of the NHS and Social Services and
• the impact of the government's NHS and Social Care reform programmes.

The MNDA Board decided to overspend its budget by £400k last year in order to fund the increased demand for support services. It is intended to make good the shortfall by increasing fundraising efforts and by asking the NHS to fund those services that the MNDA currently funds that are in fact an NHS responsibility.

Raising Public and Political Awareness: National Office works to make the voice of people living with MND heard:
• Princess Anne hosted an event to debate end of life care and issues
• A campaigns area of the website has been developed, supported by workshops. There is a 'cuts watch' campaign and a 'hardest hit' campaign which collects personal stories
• Public awareness raising activities including

o Sarah's story;
o Patrick The Incurable Optimist;
o Stephen Hawking;
o Chris, Stuart and Emma Broad

Kirstine concluded her presentation and was thanked by David Cairns who asked if there were questions or comments from the floor.

Stella Waterer said that she had worked with the MNDA since the 1990's and had seen a transformation in recent years in the way it worked and the successes it had achieved.

David Thomas said that he would like to record his deep and heartfelt gratitude for all the work that the Association was doing.

Spreading the word about legacies

Over the last few years, legacies have provided around a third of the MND Association’s income. It is our largest single source of voluntary income and a way for a person, even after they have passed away, to help care for people now whilst maintaining their commitment to the eventual eradication of MND.

Quite simply - legacies are absolutely vital in helping meet the costs of our world class research programme and extensive care services. But as we know, the demand for our services is growing all the time, especially with the almost certain future cut backs in statutory services.

However, we always recognize that a valid will is first and foremost an important way to secure the future of family and friends and to make known personal wishes to those left behind. Only after providing for family and friends, do we ask people to consider including a legacy to the MND Association to help continue our work.

It’s simple to leave a legacy. It can be easily incorporated into a new or existing will and there can be any number of legacies in a will. We always recommend that a qualified solicitor is consulted and our website contains a link direct to the Law Society website which enables local solicitors to be easily identified.

An important consideration with any estate is taxation. Happily, any legacy left to a charity, like the MND Association, is exempt from inheritance tax. Again the information pack explains this more fully.

To request a Legacy Information pack, please email Stephen May at stephen.may@mndassociation.org or call him on 01604 611865 Information is also available on the legacy pages of the Association’s website at www.mndassociation.org/legacies

New Year Event: 29 January 2011

This year's event at the Holiday Inn focused first on a report by Rachael Marsden, co-ordinator of the Oxford MND Care Centre, about the 2010 International Symposium on MND and second, on a presentation about Patrick The Incurable Optimist by Professor Martin Turner, consultant neurologist from the Oxford MND Centre.

But before he introduced the speakers, the Chairman, David Cairns, paid tribute to Barbara Farrer, who has retired as an Association Visitor in Oxfordshire. Barbara has not only worked as an AV but has unceasingly raised funds for the Oxfordshire MNDA branch by holding coffee mornings in Witney and by using her warmth and charm to encourage groups to which she belongs to raise more funds. David presented her with a bouquet of flowers as a mark of the affection and respect in which she is held by the branch and its members.

Rachael was one of the large group from Oxford presenting their work at the International Symposium on MND in Orlando. Rachael said she spoke about her work in Turkey, sharing expertise and experience to help develop best care there; Bridget Taylor had given two well-received presentations about the ways in which MND affects the expression of sexuality; Dirk Baumer had spoken about his research on juvenile ALS; Martin Turner had presented work on using MRI to reflect changes at the 6 month follow up and Rakesh Sharma presented his work on eye tracking. Rachael went on to outline presentations she had attended at the Symposium, including on improved communication aids like the development of the use of the iPad and of Voice Banking - technology using the person's own natural pre-recorded voice in communication aids; developments in the beneficial use of yoga and also techniques in airway protection and breath stacking. Lesley Ogden, Branch Secretary, also attended the Symposium, working as a conference administrative assistant. For her a lasting memory of the event is the view she had of hundreds of scientists and health and social care providers and researchers from all over the world listening to the chairman open the Symposium as they prepared to spend a week together focusing together on ways to defeat MND and to improve the care of people living with MND.

Matthew Jones told the meeting about how he and his brother Simon and three of their friends are running the Reading half marathon on March 20th to raise money for MND. Matt's mother Lorraine was diagnosed with MND in September. Matt is also helping the Oxfordshire branch set up its own Facebook page.

Professor Martin Turner was our speaker after the coffee break. He explained that Patrick The Incurable Optimist had been invited to speak but had been unable to make the date. Martin is a neurologist carrying out research into biomarkers to help make diagnoses of MND more swiftly and surely. He is co-director of the MND centre in Oxford. He explained that he met Patrick as a patient and that they quickly found they had an affinity with each other, being of a similar age and having similar families. Martin showed us videos from Patrick's website, including one Patrick had made especially for our meeting, designed, successfully, to make us laugh. Before he dies Patrick intends to paint portraits of 100 people who give cause for optimism that we will defeat MND through research and good care and the human spirit. Patrick's campaign has gathered momentum and considerable support, sometimes from people who had never heard of MND but had visited the website. Martin ended his presentation by reading to a silent room a poem Patrick has written to his children whom he will not see grow up.

There will be an exhibition of Patrick's portraits along with research by Martin in Oxford at the Natural History Museum from 31 March 2011 to 6 May 2011.

Team Diddy

TeamDiddy Matt Jones, his brother Simon and three of their friends have joined together to become Team Diddy. They are running the Reading Half Marathon on Sunday 20th March in aid of our branch of the MNDA. Their mum, Lorraine, was diagnosed with MND in September last year. If anyone would like to sponsor them the Just Giving page is: www.justgiving.com/teamdiddy

Follow their training progress at:
www.facebook.com/teamdiddymnd,
twitter.com/teamdiddymnd

Update: Team Diddy raised £5177. Well done!

Aromatherapy

The Family and Friends support group at the Holiday Inn in September enjoyed a talk by aromatherapist, Eleanor French. An aromatherapy massage with essential plant oils helps to relieve the stresses and pressures in people’s lives and can promote a sense of wellbeing. It is one of the fastest growing complementary therapies. She demonstrated some massage techniques on a carer and a prize draw was held for a treatment at one of her practices in Wallingford or Witney. This was won by one of the branch supporters who generously shared it with her friend, a member, who has MND. Plenty of time was left for socialising and enjoying refreshments.

Congratulations and thanks to our girls!

GNR Joanne Warren and the FAST team completed the Great North Run raising funds for the Oxfordshire Branch of the MND Association and research into the disease.

Getting Through The Corridors

On Monday June21st four delegates from Oxfordshire travelled to the House of Commons to attend a parliamentary reception to lobby for a National Strategy for MND. The Oxfordshire group made their way through the historic corridors to attend the event which followed the handing over of a petition of 16,000 signatures at Downing Street in support of the National Strategy.

HoC5 Lord Hunt of the Wirrall opened the reception and both Professor Colin Blakemore and Chris Woodhead spoke with passion about the need for the strategy. The key messages were well received by the MPs who were present, other MP's sent messages of support. The reception marked an important stage in the drive for the strategy. There will be more corridors to walk along the way but by taking action we can all add strength to the ultimate goal of achieving a National Strategy for MND.

Joanne Warren

Joanne Warren completed a 10k hard run in Brackley on the 12th June. This is all in preparation for the Great North Run on the 19th September in memory of her dad, John Walliker who lived in Waddesdon. After only a year of having MND, he died in November last year. If anyone would like to sponsor her the just giving page is www.justgiving.com/forpops

New stem cell research to unlock the secrets of MND

This summer the Association will begin funding its first stem cell research programme. The programme will involve induced pluripotential stem (iPS) cells, which are created by reprogramming adult skin cells so that they behave in a similar way to embryonic stem cells. The iPS cells can then be used to generate living human motor neurones for laboratory study and, eventually, for efficient drug screening.

You can read all about the programme in the news in research article on the MNDA website.

Perfect Day From Start To Finish

The branch held its AGM at the Holiday Inn Oxford on April 10th. The day was well attended and David Cairns reviewed some of the branch activities over the year.

AGM_2 AGM_3 The outstanding amount of over £30,000 has been raised over the last 12 months for people living with MND in Oxfordshire. This included three large donations from individuals, a donation of £6000 from the Anglia Co-operative Society, and £5000 from AWE Aldermaston. There were also over 50 donations from individuals and small groups in the area. Fundraising activities in the area raised about £8000. This was a wonderful effort by all concerned.

We said goodbye to two committee members,John Kay and Stella Waterer who have served the Branch well for many years.

AGM_5 After lunch a cheque for £2,100 was presented to the Branch by the Chairman of the local lodge of the Ancient Order of Buffaloes. This money was collected by members of the lodge over the last year and is a very valuable addition to the Branch funds.

AGM_2 The afternoon speaker was Professor Colin Blakemore who captivated the room with his delivery on the development of the brain and particularly its ability to reorganise itself and compensate in particular areas.

Click here to view a lecture from The Royal Society website , by Professor Blakemore titled 'Plasticity of the brain: the key to human development, cognition and evolution'

AGM_1 Finally the afternoon closed with the presentation to Stella Waterer of long service medal by the MND Association for all her work in the area.

Moira recommends RCV

Ryder-Cheshire volunteers have provided me with a weekly visit from a volunteer for several years since I became disabled. It is an excellent scheme and my current volunteer visits for 2hr a week and we are currently sorting out all my old photographs into albums. Previously, I had a volunteer and we became great friends and went on holiday to Cyprus together in 2007.

RCV started approx 23 years ago and they are named after Leonard Cheshire and his wife Sue Ryder. Leonard Cheshire lost both legs in WW2 and found that there was nothing for physically disabled adults to do in their homes. He founded Cheshire Homes where disabled adults can live; go for respite care or holidays. Sue Ryder founded the Sue Ryder Homes which are run along similar lines and also Sue Ryder Charity Shops.

RCV was started to accommodate these people at home by providing someone, other than their carer and family, who can visit them at home to carry out leisure and learning activities. These visits are aimed at relieving boredom, befriending and providing company as most of its members are confined to their homes due to their disability. Also they offer meetups for lunch or afternoon tea.

There are 9 areas of the country covered at the moment, with 2 more branches due to open soon. These range from Aylesbury, VWH, South Oxon, East Oxon, Cherwell, East Midlands, Reading and Warwick.

The website is www.rcv.org.uk
Carole, Co-ordinator of White Horse Branch
email:carol.johnson@rcv.org.uk

Chinese whispers game representing a motor neuron played at the Oxfordshire Science Festival launch day

Many interesting stalls and a huge stage appeared in Broad Street Oxford to launch the Festival with events related to ‘Science in your World’.

There were not quite enough people to break the world record of 1330 people, but the attempt was fun and was successful in raising awareness of motor neuron disease and the Association.

Our stall entitled ‘Enabling Communication’, decked out with colourful balloons, attracted many people to try out various aids to help people who have difficulties in speaking.

OSF_2 The latest eye controlled technology was extremely popular with both children and adults. Using only a small eye movement to activate the screen they sat unusually still demonstrating how little physical movement was needed. Other aids tried out by the public were lightwriters, palmtops and a letterboard all invaluable aids currently being used by people affected by loss of speech. Adaptations to computers were also shown making communication easier for people with MND and other disabilities.

OSF_1 Our volunteers were able to talk to many people about MND and its effects and pages of signatures were collected for the petition to be presented to Government calling for a National Strategy to set standards for care of people with MND.

I Never Thought of That!

The Holiday Inn saw another Family & Friends Group event take place on Friday February 26th. It was part of the Oxfordshire MND branch calendar of activities. The event was geared around the theme of gardening as suggested by a member of the local branch.

The main business of the afternoon was in two separate parts led by Susan and David Batt-Rawden and Susan Williams-Bradley.

David presented illustrations of a wide range of wonderful gardens to visit and shared with everyone the experiences of family outings and disabled facilities. The beautiful and varied venues were diverse and full of adventure. The research around accessibility at each place was inspirational.

Fun was a theme in Susan Williams-Bradley illustrated talk. Susan explained ideas how to make gardening possible for all. Susan talked about planning being pivotal to managing the garden and ensuring it continues to be a pleasure and fun, not a burden for anyone.

Marvellous practical ideas were put across for gardening at different heights and with different plants. Susan offered her services to those who might welcome a little personal input.

New Year Celebration

Saturday January 23rd saw a well attended branch meeting take place at the Holiday Inn Oxford. Not only was this the first get together of 2010 but an opportunity to hear about the Berlin International Symposium on MND which had taken place in December.

Dr Kevin Talbot spoke with enthusiasm about the symposium and the huge opportunities it presented for scientists, doctors and researchers to explore and discuss latest research findings together. From the symposium Jenny Rolfe, occupational therapist, explained how she is now planning to map out individual needs and types of wheelchair a person may require at different stages of their journey.

The local branch has been delighted to be able to raise funds for the provision of three cough assisters. The cough assister was demonstrated by Liz Bellido and Jenny Rolfe. Liz explained how the cough assister worked and how it can be of huge value to people with MND in specific circumstances. Dr Kevin Talbot reinforced the value of these machines. Thank you to everyone who has helped with fund raising.

During the afternoon cheques were presented by Chris Boyer to David Cairns for the local association on behalf of her husband’s memorial.

Pieteke Marsden delighted us all with a musical interlude singing and playing her guitar adding yet another dimension to the occasion.We hope you will come again! Everyone enjoyed a chat and homemade refreshments following the music which is always a special opportunity for catching up with friends.

What a fantastic and special start to 2010!

Donation

AWE Aldermaston made a very generous donation of £5000 to the Oxfordshire Branch of the MND Association.

Kilimanjaro Climb

Gareth Ogden completed a climb of Mount Kilimanjaro raising more than £1,520.

Gareth’s uncle was a founder member of the Association 30 years ago and in this anniversary year, he decided to climb Mount Kilimanjaro, the highest mountain in Africa. On his ‘just giving’ page he says, “The MND Association is a charity that means a lot to me and my family. My uncle died from MND at about the age I am now (35) so I want to raise awareness and hopefully a few donations."

It was a very tough climb over five days over rough terrain but mainly because the effects of the altitude take their toll on progress. Only 6 of the group of 12 reached the summit and Gareth was one of these. On his blog he writes: “with one final push we were there.. again the last few steps are emotional. 8.30am - Uhuru peak, the summit of Kilimanjaro and highest point in Africa. The pressure of taking this on and asking people to support you is relieved. It’s now all justified. There are a lot of things and a lot of people you think about. Then there is the most spectacular view everywhere- amazing glaciers also the barren crater itself. I won't even begin to try to describe it, it is very 'other worldly' ".

Gareth is very grateful to everyone who sponsored him so generously and the experience brought home to him just how tough life with MND must be.

Annual General Meeting

AGM The Branch AGM was held again this year at our favourite venue the Holiday Inn at Peartree Roundabout, Oxford. It is a very accessible and pleasant building. Approximately 30 people attended, and the cakes (made by Branch memebers) and sandwiches were much appreciated!

AGM We were delighted to see Francis again, an older Branch and ex Branch Committee member.

Our Chairman, David Cairns, reflected on his first year in office, and talked about what we had achieved and his aims for this year. He stressed that we need more volunteers as he would like to set up a sub-committee for fundraising. Our Treasurer, Tim Kennedy, described the monies we had received over the year from donations or fundraising and how we spent this for our clients with MND in Oxfordshire. The Branch Committee considers requests for funding carefully each month.

Dr Kirstine Knox, the Chief Executive of the MND Association gave a talk "Our Progress in 2008 and our Prospects in 2009" which was very interesting and informative and resulted in a lot of questions.

One of the points of discussion was the amount we send to the National Association each year and what the Branch receives in return in the way of support.

Jenny Rolfe, Occupational Therapist at the MND Care Clinic, Oxford gave a stimulating talk "Transport and Mobility". She discussed the problems people who have MND might have with walking and showed pictures of mobility aids that might be useful. Jenny explained that the NHS will provide manual wheelchairs, but not all of these are supportive enough. It is advisable for anyone considering a wheelchair to have an assessment so that the right chair can be selected and their long term needs considered. A tilt-in-space wheelchair may be more appropriate.

Jenny also gave examples of powered wheelchairs which can be divided into power-assist and powered wheelchairs. These can be very costly and cumbersome and again an assessment is recommended. People often think a scooter would be useful but this would have to be purchased privately and insurance can be difficult. For someone sitting in a wheelchair pressure management is very important, the use of a TIS wheelchair can often help this problem.

Several Branch members have been concerned about getting around when they begin to use a wheelchair. Everyone with MND who is still driving must inform the DVLA and may need to have an assessment. Jenny showed us pictures of swivel seats and vehicles with adaptations such as hoists. The Motability scheme may help people to obtain the car they need. For more information and links, please see our Information page.

News Archive

The following news stories are now available on the News Archive Page

Oxfordshire Branch Newsletters

The Newsletter is there to provide all its readers with information about MND and reflect what is happening not only in Oxfordshire but regionally and nationally. The intention is to keep readers up to date with issues and developments concerning MND. Also the branch newsletter highlights current events, fund raising, future dates and tips and suggestions for a range of things from recipes to holidays. The letters page is a further opportunity to communicate current matters and concerns.

If you wish to be included on the mailing list for a newsletter please contact the branch secretary, Lesley Ogden.

Submissions and contributions from readers are central to the success of the newsletter. ‘We Need You!’

Please send any items and letters to be included to Jane Street at jbskirkella@yahoo.com or contact me on 01993 813573.

If you do not already have Acrobat Reader, which you will need to download the newsletter, please click on the icon below:

Winter 2011

Branch walk to D'Feet MND
Royal Visit
2012 Branch Events
Small Grants and Funding Contributions
Friends & Family

Past Newsletters

The main contents of the past few issues of the newsletter are shown below. If you missed or can't find a previous issue you can request an email copy from our Branch Secretary.

Previous issues of the newsletter can be downloaded by clicking on one of the links below.

August 2011