East Dorset & New Forest Branch News

 

Oh so much to read!!

Extracts from the AUTUMN/WINTER 2008 newsletter 

From your Chairman

Another year gone, where does time go?  I have enjoyed being your chairman for another year and an Association Visitor (AV).  It’s good to feel that you are helping someone somewhere no matter how small or large it may be.  I thank all the ladies of the committee and the fundraisers not on the committee who have done wonderful work this year.  We thank you with all our hearts.  A special mention at this time to our secretary ‘Audrey Beall’ who keeps us organised at all times.  Thanks also to all the AVs who do a wonderful job visiting people with MND.  It’s not easy as I know so God Bless you all and a Happy Xmas and New Year.

Chris Anderson

---oo0oo---

From your Secretary

Sadly for us in June Karen Wetherick, our RCDA, moved to live in France but we are pleased to see a new lady in post - Annemieke Fox - whom some of you will already have met.  We welcome her to this very important position and wish her well in the years ahead.

Mary Southgate, who was a supporter for many years, has died.  We send our condolences to her son, Paul.  Mary had helped from the late eighties, she was on the Committee and had been in charge of fundraising for a number of years.    Mary will be sadly missed by many and we could always rely on her bringing to our attention any mention of Motor Neurone Disease in the local “Echo”.

The January Tea Party is on Saturday, 31 January, 2.30 – 4.30pm at Canford Magna Centre.  It is the Committee’s way of saying “Thank you” to all our supporters so please come along.  We are hoping that “Lacrimosa”, the young vocal group who entertained us so well last year, will be with us again.

OSCARRS

(Outstanding Support, Care, Awareness and Revenue Raising

The branch was proud to receive one of the five OSCARRs awarded at this year’s Annual Conference.  They are awarded to the branch found to be the best in the country under various headings.  We received ours for Branch Achievement and focussed on the Art Exhibition.  Mike Hardy wrote an excellent report for our last newsletter and that formed the basis of our entry.    We not only received a certificate and shield but also a bottle of champagne. 

We had great pleasure at our last Get-together at Barton-on-Sea in presenting Norman Marven with the champagne as he had been such a help with the organisation for the Art Exhibition.

The branch also received a commendation OSCARR for Inspirational Influencing.  The nomination read as follows:

At the instigation of our President, Dr Charles Hillier, and Karen Wetherick, our previous Regional Care Development Adviser (RCDA), a Multi-Disciplinary Team (MDT) has been formed to cover all plwmnd in the Poole area.

The meetings will be held every two months at Poole Hospital, chairmanship will alternate.  Already there is an operational policy document in place which will be reviewed in June 2009.

The first meeting was held on 28 May and was attended by 12 people: 2 District Nurses, 2 Occupational Therapists, Sister from the local hospice, Dr for palliative care, 2 Speech and Language Therapists, Physiotherapist, Dietician, and 2 representatives from MND (RCDA and Association Visitor).   Each person living with mnd (plwmnd) was discussed.

At the next meeting on 2 July attended by 14 people agreement was reached on the proforma for written information and the letter to GPs to explain about the MDT meetings.  Within 5 working days of the meeting the GP will receive in written form the recommendations of the MDT.

I was most impressed with the professionalism and the keenness shown by all the Health & Social Care Professionals.  They were very open to any suggestions made by the representatives of the MND Association.  Communication is so essential and by sharing in discussions on all plwmnd, this will add enormously to their knowledge of MND.  They are certainly keen to do all they can to help those living with MND and a group such as this will have enormous benefits to patients and carers.

It is proposed to start a similar group in Bournemouth shortly.

The Special Interest Group started earlier this year has had a second meeting – the first one led by Dr Hillier on the diagnosis, the second by Dr Richard Sloan on the Mental Capacity Act in relation to advanced directives.  These meetings will be quarterly and cover the whole of our area.

These are very positive ways in which we can work with the Health and Social Care Professionals to educate and communicate to ensure that plwmnd receive the best possible care.

So, all in all, a very good year and we thank all those who contributed in any way to making it so. 

Audrey Beall

  Audrey Beall

From your Treasurer

 

              TREASURER’S REPORT          

 Once again we are almost at the end of another financial year.  Despite the Credit Crunch MND has been well supported.

The various events have raised the coffers..

The Wimborne Folk Festival                                             £244

The monthly Craft Fayre at Canford Cliffs                       £705

Wareham Fayre                                                                 £431.62

Walk to D’Feet                                                                   £481.49

The Clothes Sale at Wimborne Methodist Church         £638.72

The Annual Quiz Evening                                                  £485

Sale of Greeting Cards at various events                      £145.65

These events are well worth the time and effort of the fund raising committee, however the Car Boot sale at Oakdale only raised £41.

During the last 6 months we have had a number of donations.  The Jazz Concert at New Milton £2076, Glenmoor School £422 and Mr Cvijan with matched funding £375.  Jan Dorrell of LV  also raised £457, and part matched funding many smaller donations for which we are extremely grateful.

All theses monies are used locally to help people living with MND.

I will conclude by thanking every one who has contributed however small or large and also send my Seasons Greetings.

Audrey Warner

 

Association Visitors

 Our team:- Chris Anderson, Dorothy Gardiner, Val Spence, Rose Ricketts, Alex Campbell, Jan Eastgate and Audrey Beall.

Our new RCDA

Hi, my name is Annemieke Fox and I am the new Regional Care Development Advisor (RCDA) covering Hampshire, Dorset, the Isle of Wight and the Channel Islands.  The RCDA post has changed over the years so I thought it might be helpful to give you a brief summary of the role.  There are 4 main aspects to the job:

1:    Supporting people with MND and their carers through one of visits to provide advice and information and ensure they are accessing appropriate services.

2:    Supporting and training the Association Visitors (AV) who have ongoing contact with those people with MND who want it.

3:    Educating health and social care professionals via one of teaching sessions and special interest groups (SIGs).

4:    Influencing care provision and service development to ensure people with MND are able to access the best standards of care.  This is through setting up multi-disciplinary team meetings, care pathways and talking to health and social care commissioners.

My background is as a palliative care nurse at the Macmillan Unit at Christchurch, so I have experience of supporting people with MND from diagnosis onwards.  I am thoroughly enjoying my new role and the challenges it brings, and hope to be able to make a real difference to the care of people with MND in  my area.

Annemieke Fox

   ************  Royal Patronage  ************

I am delighted to be able to announce that HRH The Princess Royal has accepted an invitation to become Royal Patron of the Association.

The Trustees and I are honoured that Princess Anne has graciously accepted this invitation. Her support of our aims will help move us one step closer to realising our vision of a World free of MND.

You may be aware that the Princess is also the President of the Scottish Motor Neurone Disease Association, and so is sympathetic to the cause of supporting people with MND.

We are currently in discussions with the Princess’s private secretary over specific activities she will carry out on our behalf over the first year of her patronage. Liaison with the Princess’s private secretary will be carried out via my office.

An announcement will shortly be made on our website.

Warmest regards

Kirstine Knox

   

The Rocking Horse

TDP-43: What it really means

This is an important part of the jigsaw in piecing together our understanding of MND

AS you will have seen in the emails we have circulated to you and the memo papers that we included in the March mailing of The News, an MND research paper has been published in the prestigious journal Science.

This is a complicated piece of research so we are recapping the main points so that if you asked “What does this mean for MND research?” you will feel confident to give a short, easy to understand, yet accurate answer.

Is this news as exciting as it sounds?

Yes. The discovery of a cause of MND could help to significantly accelerate our understanding of the disease.

Does this mean an end to MND?

Sadly no it doesn’t, but it is an important part of the jigsaw in piecing together our understanding of MND.

Should volunteers tell other people about this breakthrough?

Yes. We believe the discovery has the potential to be a key step in developing future effective treatments.

What should I tell them?

Researchers have found that a very rare mistake in a gene called TDP-43, which provides the body with instructions to make the TDP-43 protein, can directly cause MND.  This means that TDP-43 could have a very significant role to play in damaging motor neurones.

Does the research only apply to people with familial MND? 

The researchers found the faulty TDP-43 gene in just one family affected by familial MND and in a very small number of other people with MND.  However, scientists have found that the vast majority of people with MND show an abnormal build up of the TDP-43 protein in their motor neurones, even though they don't have the faulty gene.  This means the research has a wider impact for people living with all types of the disease.

How will researchers use this discovery in their investigation of other types of MND?

Thanks to this discovery, researchers now know that the build-up of the TDP-43 protein inside the motor neurones of people with MND is not just a harmless by-product of MND but that it actually contributes to motor neurone damage.  This knowledge will open up a new avenue of exploration in MND research.

Did the Association know this news was coming?

Yes. This research was partly funded by the MND Association and the Medical Research Council along with other organisations.

What did the Association do in preparation for the big announcement? 

A few days before the news broke we worked behind the scenes with the national media to explain what the news meant for MND research.  We held a media briefing in London at which Brian Dickie, Director of Research Development at the Association, and Professor Chris Shaw presented an overview of the research findings and answered any questions the invited journalists had.   Following the briefing we also set up additional telephone interviews with Professor Shaw and Brian Dickie with journalists who wanted more information or had further questions.

Where can I find out more?

More information can be found on the Association’s  website, www.mndassociation.org.   Just key in the search term TDP-43.  Here at the Association, we believe the discovery has the potential to be a key step in developing future effective treatments.  Although scientists are cautious about predicting a future cure or treatment, it is believed that this latest discovery will accelerate our understanding of the disease.  Professor Shaw said: "The mutations give scientists around the world a new tool to explore the disease process and develop new therapies."  This is exciting news for MND research and we were really pleased to see that it gained considerable coverage in the national newspapers and so raising the profile of MND.  For example, the story was featured in The Independent, the Financial Times and The Scotsman. The story was also covered by the BBC’s online news pages and The Daily Telegraph’s website.  If you have any queries about Professor Shaw’s research and what it means for MND research then please do contact the Research Development team on 01604 611880, or at research@mndassociation.org .

Wheelchair User Questionnaire

Changes being made into the way people can access equipment and wheelchairs form the stat services.

‘Just recently, as part of this process, a wheelchair user questionnaire was placed on the Care Services Efficiency Delivery website but there’s been little publicity about the opportunity (it wasn’t mentioned at a CSED community equipment event that I attended yesterday). As far as I’m aware the questionnaire has simply been put there and so I’m trying to alert as many people as possible to this opportunity. The data gathered will inform recommendations on the direction of future policy so it’s crucial that wheelchair users’ voices are heard.

The CSED webpage, from where the form can be downloaded, is here: http://www.csip.org.uk/~csed/workstreams/transforming-community-equipment--wheelchair-services/wheelchair-services/wheelchair-services-user-questionnaire.html

WHEELCHAIR PRESENTATION

It is not often you get a chance to fulfil two ambitions in the same moment but thanks to the generosity of the Rotary Club of Ringwood this happened to me.  The occasion was the official handover of three new State of the Art wheelchairs financed by the Club during Dennis Hancock’s year of Presidency.  Dennis had chosen MND as his charity of the year as his daughter Sarah had died from the disease in 2003.  £4114.87 had been raised from fundraising events, mainly from a Sponsored Horse and Cycle Ride held in May 2006.  The wheelchairs were presented to the St Leonard’s Wheelchair Clinic on behalf of the East Dorset and New Forest MND Association.

To commemorate the occasion Audrey Beall, our Secretary, presented the President of the Rotary Club of Ringwood, Dick Serjeantson, and Dennis Hancock, past President, with a certificate to express our thanks for the generous gesture, which would do much to ease the bottlenecks and delays in providing much needed support to those living with MND when it was needed.

Those two ambitions: well I have always thought I should be a model and this was my big chance. There was a rumour that we models had been chosen as the “Little and Large” of the group but looking at Ross, as debonair and suave as ever, it was obvious we had been chosen for our good looks and photogenic personalities.  I leave you to judge for yourselves.

The second ambition was the chance to do a Top Gear type review and road test of the wheelchairs.  Here it is: The two large attendant propelled chairs were comfort on wheels.  Padded seats, a wider than average axle and a longer wheel base made them a joy to sit in and the balance made it easy to push and steer. With so many adjustments, getting settled was akin to being fitted for a hand made suit. The third chair was a nippy little electric model with dual controls enabling the user or their carer to operate the controls.   A very natty compromise allowing both independent use and the carer to take over when needed.   A very useful addition to the fleet.

We are extremely grateful to organisations such as Rotary Club of Ringwood who fundraise on our behalf enabling us to maintain our independence for as long as possible.

Mike Hardy

 

REPORT ON EAST DORSET AND NEW FOREST MNDA AGM 24-Mar-2007

If Mighty Oaks from Little Acorns grow then our little branch is well on to its way towards being a healthy sapling. As Chairman Chris mentioned in his welcome there are very optimistic signs that the sapling has substantial roots as shown by the active involvement of so many young people in branch activities. It is the blend of youth and the wisdom and sheer dogged determination of the more mature members that gives the branch its very distinct and friendly identity. We all know that a healthy plant needs more than good roots; it needs dedicated, loving care and attention. This would not happen without the constant efforts of Chairman Chris and his Coven, sorry Committee, of stalwart ladies, to all of whom we owe a sincere vote of thanks.

It is impossible to pick out one strength of the branch as so many areas of achievement were mentioned. To some it would be the range of activities that are offered which are accessible to all, others might chose the fact that all 31 of those living with MND in our area are in active contact with the branch and all must be impressed with the continued rise in the money raised for local use and for National Research.

It is hard to pick out individual items but Mel and Danny’s rock concert was awarded an OSCARR for the way it raised not only money but spread awareness of MND and its associated problems to such a wide audience and Gil Rice for his sins has now taken on production of the Newsletter to add to his valuable work running our excellent website. Of course we are all proud of our Audrey and fully endorse the decision of Poole Council in awarding her the Poole Achievement Award for 2006.

The Key Note address came from Dr Ellis who explained some of the new initiatives in treatment and research. In an up beat optimistic presentation he talked of the potential benefits of “Non-Invasive Ventilation” in raising the oxygen levels in the lungs and thereby reducing the risk of infections and improving overall quality of life, but balanced this with the problem that at the moment such treatment was not available locally. He outlined plans whereby the implementation of the White Paper “Our Health, Our Care, Our Say” might lead to improved Neurological Care under an enlarged Poole-Bournemouth umbrella.

As a caveat he raised the paradox that whereas we are all pleased that MND is such a rare disease it is that very rareness in comparison with Parkinson’s and Alzheimer’s that would inevitably prevent a major influx of investment in dedicated MND care but finances permitting there could soon be local Specialist Neurological Nurses who would take the care into the home with obvious benefits.

Dr Ellis also spoke on the potential benefits of Stem cell and genetic research. Again he warned of the dangers of expecting a “quick fix” and gave examples of unscrupulous schemes that had dashed hopes in the past. He did hold out hope that stem cells might provide a way forward in that their ability to develop  into a range of cells had already been a success in such areas as bone marrow transplants as part of some  cancer treatment.

 He went on to show that although at present the only clinical trial of medication proven to have a beneficial effect on MND was Riluzole there was room for cautious optimism. There were broad similarities in the way MND, Parkinson’s and Alzheimer’s attacked the nervous system so reversing the paradox  arising from the relatively few people living with MND it was very possible that research into any one area could open up and reveal new lines of research for other areas to follow.  For example the aptly named SOD1 gene had been highlighted as a mutation in familial MND but there were 14 known gene mutations that occurred in those living with Parkinson’s.

He ended on an up beat note pointing out that ethical obstacles to research in the area of stem cells and genes in the USA was resulting in a mini-reverse brain drain of top researchers into this country so the valuable work in donating funds for central research could well make the difference and lead to a crucial break through.

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A LAYMAN’S VERSION OF WHAT I THINK THEY SAID AT THE 2007 SPRING CONFERENCE

By Mike Hardy

As always the Spring Conference was stimulating and informative. Session 1 saw Dr Brian Dickie the MNDA’s Director of Research talk on 21^st Century Science. In an amusing and understandable presentation he used the analogy of a set of scales and grains of sand gradually upsetting the balance to explain the multi-factorial causes of MND. In essence we all may have a pre-disposition to MND but a gradual accumulation of factors tip the balance for some of us. The exact factors remain to be identified but may include viral infection, physical trauma and environmental damage from chemical exposure i.e. Pesticides.

The latest research includes

                       Gene Hunting a whole Genome scan involving 2600 people living with ALS and a 2600 control group to try to identify “rogue genes” that may possibly mutate in those with MND.

                       Gene Therapy attempts to “switch off” genes starting with the aptly named SOD1 gene. This would hopefully lead to the “switching on” of good genes through the process of providing nerve nourishment. This worked well in the laboratory but not in clinical practice because the drugs involved were very fragile and hard to deliver. (more of this in the final presentation)

                       SOD 1 Mice Therapy has shown that with appropriate nourishing of the nerves longevity of specimens  had improved but the major problem was scaling up the effect from very small Mice motor neurones to full scale human ones that might be up to 1 metre in length

                       Stem Cell Research was already proving useful in the laboratory where it was used to test drugs and it was now possible to turn stem cells into motor neurones.

                       Somatic Cell Nuclear Transfer ( the creation of hybrid cells with MND) was allowing the researchers t begin to understand why Motor Neurones die to identify more genes and to screen drugs very rapidly

                       A note of caution, although this could lead to stem cell therapy and potentially a self-repair system this was all very much theory at the present and uncontrolled multiplication of cells or rogue development could lead to many unwanted and dangerous side effects not unlike cancer or serious life threatening  malformations. Additionally our Motor Neurones start life very small but grow with us; there is no understanding whether new Motor Neurones could be encouraged to grow in a similar way.

                       But experiments on improving the Nerve Nourishment factors with these stem cells did seem to indicate potential improvement with possible delayed onset of symptoms and improved quality of life.

                       The conclusion seems to be that future treatments will focus on a number of these areas and could include a cocktail of medications as with the treatment of AIDS and some cancers.

The Second Presentation featured Dr Richard Sloane, Medical Director Joseph Weld Hospice Dorchester speaking on “Palliative Care -------what is its place in MND?”

Dr Sloane explained the psychological stages most people diagnosed with any life threatening illness are likely to go through,

Shock-Denial-Anger-Depression –Acceptance

and how the Hospice movement can help at every stage. It soon became clear that we are in this area are blessed with access to an enlightened medical team who already display lots of “joined up thinking “ which is sadly lacking in many other areas. The joint Neurologist and Palliative Care Specialist Clinics and the excellent support from the Lewis Manning centre and the Christchurch MacMillan unit mark this area as being in the forefront of contemporary practice.

Dr Sloane talked of how the Stigma of Hospice equalling terminal care was disappearing with a much wider recognition of the range of long-term services that they are able to provide. Possibly the most important of these is to provide a central contact point and co-ordination of the range of services and professionals in one easily accessible place.

These services include

                       respite care in residential or day care form

                       physiotherapy and related complimentary treatments

                       non-intrusive ventilation

                       counselling to everyone in the family affected by the illness

                       fast tracking of key services e.g. wheelchair services

                       more dedicated time with   the professionals involved in care

                       co-ordination and speed of response.

The third Presentation featured Lynsey Bilsland who spoke on her research work under the title “Hitchhiking on the Nervous Highway “. She used a similar analogy to Dr Dickie, liking the research pathways being explore to a jigsaw of many pieces again concluding that the causes of MND are likely to be multifaceted and hence any treatment would almost certainly have to tackle a number of defects and so was likely to require a cocktail of medication.

She explained a number of proposed mechanisms that were being explored as possible pathways to a successful “cure/treatment”. I think she outlined the following:-

Oxidative Stress	Where defective genes like SOD1 express too many free radicals leading to cell death in the Motor Neurones
Glutamate Overdose	Leading to cells becoming too excited producing too much calcium again leading to cell death
Mitochondrial Dysfunction	The energy producers’ essential to healthy motor neurones become damaged and cease to carry out their supporting role properly.
Inflammation	It is believed that sometimes the helper cells that keep motor neurones healthy become inflamed and cease to be effective.
Protein Aggregation	Proteins need to retain a certain shape to function correctly but some seem not fold properly leading to the formation of clumps which in turn damage other healthy cells.
Abnormal strings of proteins	In this scenario the clumps of cells jam the axon (the pathway along which the motor neurones communicate ) and this in turn leads to the final point:-
Axon transport deficiency	Where the pathways are obstructed preventing the passage of essential messages.

It is in this last area that Dr Bilsland is involved in active research.

Motor Neurones can be very long, up to a metre in length, and need regular supplies of energy and a good healthy transport system to carry messages from the brain and the central nervous system and back again. In those living with MND the messages are slowed and become ineffective.

Dr Bilsland’s method involves the use of modified Tetanus Virus Toxins. The virus cells are incubated in the laboratory and turned Fluorescent so that any movement can be studied. In Mice models the nerves are injected in those with MND and clear defects in transport can be tracked. Earlier studies were only testable in Post Mortem examinations but a breakthrough is that these studies are now possible using anaesthetised living specimens.

Studies of the transport systems in sciatic nerves, tracking movement of the modified virus from the muscle to the spinal cord are now possible. For the first time this will overcome the problem of studying progression of the disease as it is now possible to track the speed of transmission of messages and rates of transmission setting the scene for further studies of SOD1 mice as they age

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MND Association Conference and AGM

14 - 16th September 2007

Audrey Beall and Judith Mills attended

We arrived late afternoon on the Friday and, from then on, it was a weekend full talks, meetings and discussions all about MND.

A film on Friday night, and a talk the following day, was presented by Jamie Heywood on how he started the largest research institute in the USA into ALS after his brother was diagnosed with MND. It was really inspiring. There were talks from some of the leading experts in MND care and research including Pam Shaw on the latest advances in MND research. There were also workshops to attend on a variety of subjects and lots of people to meet from other branches to exchange ideas with, and exhibitions to look at in between sessions.

We were told that the Government will joint fund MND research and also heard that the Association has had two of the largest single donation pledges made to research. The branches have raised over £2 million and the Association has achieved record levels of income in the last year.

Saturday night was OSCARR night. We were absolutely delighted when Audrey went up to collect the OSCARR for ‘Splendid Support’ for our branch computer project. Mike Hardy had submitted us for the award so very many thanks Mike. We were very pleased that we also had two commendations in other categories.

The President Lembik Opik thanked the volunteers and staff for all their hard work and Commitment over the last 12 months. We came home knowing that everyone at the conference was working to the same end – to a world free of MND.

Judith Mills

                       

MOBILE PHONE RECYCLING APPEAL

 

Any old unwanted mobile phone, just the handset no charger or SIM card needed, can raise between £3 and £30 for the MNDA. We are looking to collect 500 old mobiles between Easter and Whitsun. Owing to the active participation of Lynn Clark, Senior Adviser for Bournemouth Education Directorate, all schools in Bournemouth will be invited to take part in the project.                                            

Additionally Poole High School are happy to continue their  involvement with the local branch  and a number of businesses are taking part. Posters advertising the scheme are on display amongst others at the Portman HQ, the Tax Office, Bournemouth University Health and Social Care Department and  in a number  of small businesses.

Should you have an unwanted old mobile lying around, I bet you have, please bring it to any meeting or pass onto any committee member. They will eventually arrive in the hands of Mike Hardy who will arrange a courier pick up. He is already clearing space in his garage for the influx!   So far we sent off 249 which have been valued at £850 by head office.  Thanks to all of you who have donated mobile phones with a special thanks to the Tax Office

CINEMA TICKETS

(This information appeared in the Newsletter of the West Dorset Branch of the MNDA)

If you look after a disabled person and they enjoy going to the cinema, they might qualify for a CEA card to allow you to go to the cinema free of charge.

The Cinema Exhibitors’ Association card is a national scheme but not every cinema subscribes.

The card is used to verify that the holder is entitled to one free cinema ticket for the person accompanying them.  To qualify the person must be:

Getting DLA or AA or Registered Blind or the holder of a disabled person’s railcard.

It is valid for three years and there is a £5 initial fee for processing the claim.

Application forms are available from participating cinemas and can be downloaded at www.ceacard.co.uk or ring 0151 348 8020 and ask for the form to be sent by post.

Fundraising activities

 Bookmarks

 When in Scotland on holiday with friends we went to an art exhibition in Culross. Betty went in and I stayed outside as navigating steep stairs is not one of my best attributes in a wheelchair. It was sunny so I was happy. While there, she bought a bookmark, which had one of the artist’s paintings on it. Then the idea came to her, why don’t we make bookmarks to sell for fundraising. The idea was set.  When we got home, I set about designing the bookmark with one of my paintings on it. Once done we went out and got the necessary equipment, trimmer, laminator, guillotine and photo paper. The picture below shows the latest design.  Please note that when printed the little bands of green on the side of the picture don’t show!  There are other bookmarks with different paintings on.

“View from Evening Hill” from a painting by Gil Rice   Life is precious Make every day count     Registered Charity Number: 294354

 

At home, we set up ‘factory’ where I do the design, printing and trimming, Betty does the laminating (that’s the hard bit) and I then cut to size using the guillotine. We were pleased with the result and took a few to the next coffee morning and they all sold. Since then we have been churning them out and have personalized some on request by replacing the painting with a photo of the person’s choice. So far, we have raised over £200 to date, which isn’t bad. They are £1 each and £1.50 if personalized with photo’s and wording on the top line of the text.

 

Going to that art exhibition was a good idea, who would have guessed how good an idea.

Should anybody require any of these bookmarks or have their own personal ones made then please email me on gil@rice4.freeserve.co.uk with your requirements.

Gil Rice

Producing a CD

Bryan Frost, who has MND, is a member of the Association in the Portsmouth area.  Bryan has produced a CD with his band and has been selling it with all the proceeds going to the MND Association. He has already raised £1500 and would like the CD to be publicised more widely so that he can raise even  more money.  He has been performing in his spare time for quite some time and one of his ambitions has always been to record with a female singer, which he did for this CD.  The CD is really excellent - a mix of Rock and Roll and slower songs, and very well produced.  Anyone wishing to purchase  a copy of the CD should contact Annie Fitzpatrick from the  Portsmouth Support Group on 0239 2862003.

Alternatively contact Bryan direct:

Bryan Frost

Petersfield

Hants

GU31 4QG

                                                            Tel: 01730 260673

 

Can you help?

You may be aware that these days all new qualifying Social Workers have to have a Degree. The trainers and lecturers at Bournemouth University would like to make sure that the new trainees on their course are aware of the whole spectrum of clients and problems/situations that they are likely to encounter.

To provide the required enriched information, real life stories and experiences are requested giving a full clients view of ‘life at the sharp end’. I would be very grateful if you could email me (mvhardy@yahoo.co.uk) with your experiences, good and bad, of working with Social Services. Any client’s experiences will do, not just those with MND. Any information will be passed on so we can ensure that the next batch of Social Workers will know exactly what they are letting themselves in for and exactly what we expect. Any responses will be anonymised to protect the innocent so please take the time to pass on your story.

Mike Hardy

 

Drivers wanted!!

 

Poole Community Transport Service are looking for more volunteer drivers. If you would like to do voluntary work, which is flexible, and allows you to help out when you can, then this scheme is for you. Even one hour a week can make a difference. By becoming a voluntary driver you will be helping to support a project which enables people to live a more independent life in their community. If you like driving but don’t have a car, the Transport Service can also provide a wheelchair accessible vehicle for you to drive. For more information call Alison on 01202 262220.

 

 

Information Technology Project

 

“The computer has opened up a whole new world to me”. Those words from Gil Rice, who is living with Motor Neurone Disease in our area, gave us an idea for a project in 2002.  He is now able to communicate through his computer with friends far and wide as well as establishing a website for the branch.

Our project – to attempt to enable any of those affected by MND in our area who would like a computer to have the loan of one or, if they already have a computer, the branch would pay their ISP/Broadband charges for a year.

We received money from four Trusts – Armstrong, Talbot Village, Valentine and Wakeham – and so our project took off.

We have a young man whose father died of MND in August 2002 who is installing the computers.   We have been able to install a new computer for Gil, who gave us the idea, and has donated his old computer to the branch.  And a further four computers and printers have been purchased and installed.  We have paid the ISP/Broadband charges for 12 people with MND, and have purchased additional software.  In all we have spent £9000 and have just £334 left.

The project is opening up new friendships and new interests.  As our Chairman said at our last annual meeting. “We are providing something which is not essential (as it is most of the equipment we provide) but which certainly improves the quality of life for those affected”.  Some people had never used a computer before and are delighted to be in the 21^st century surfing the web”

In January of this year the branch received a commendation award from National Office for the best website and this was presented to Gil by the Regional are Adviser, Jean Covington.

We feel the project must continue and so are now appealing for further funds. We estimate that a further £5000 is needed.

At any one time there are 46 people in our area with MND.  There is no known cause or cure.  MND can destroy people’s ability to walk, talk, dress and swallow.  Quality of life is all important and this project enables people living with the disease to communicate with others in a new way and enjoy and absorbing hobby.

 

Our Website - East Dorset & New Forest Branch

The initial start of the website rather came unexpectedly.  Our Visitor, Audrey, had come to see us one day. After a chat she showed me a red folder – what was this, I thought with some trepidation.  She explained briefly that it was about building a website for the Branch.  She left it with me to see if I might be interested in doing it.  That was about 2 years ago.

I said it would give it a go, though I had never done anything like this before.  Having read through the folder I thought the best place to start would be to look at the National Office site, which was on a disc.  You guessed, I cheated and copied a page to begin with as a master.

I formulated ideas about the pages I would use, and their titles, and got information from the newsletter etc to become the content.  It took a while to get all of this together.  I created a folder on my computer into which I loaded the website layout.  I checked with Audrey quite a lot during the process.  Having decided on a rather long name I had to find out about Web Hosting packages and programmes to transfer the website from a folder on my computer to somewhere in Cyberspace (technical word, sorry!).  As my Internet Service Provider (ISP) allocated me free space for websites I decided to use that.  I used their recommended programme for transfers; that wasn’t free but I still use it to this day.

I had to get a Domain name so that the name typed was the name displayed when the site got loaded.  I got that by registering our website name with another Web Hosting company.

Having done a lot more formatting to conform with other Branch sites and the guidelines, the website eventually got ‘Accredited’ status and we were ‘live’ with our name on the list of Branch Websites.  We may have been one of four at the time. 

Since then I’ve studied quite a lot, found out more editing programmes, graphics, animations etc, and have built the website into what it is today.  I’m still learning and asking for help where I need it, never to proud to pick people’s brains.

I’m proud to say that this year all my efforts have been rewarded as the Branch got a ‘Commended’ OSCARR award for ‘Wonderous Website’' for 2003.  The award was presented to me at the Branch’s Annual Tea Party.  I was quite overcome by the event as I knew nothing about it.  I must say thank you to all the people who helped me from the initial stages to where we are now, because without that help I might still be in some of the early stages of development.  Since then we've won another 'Commended OSCARR award for 'Best Website'' for 2005.

Gil Rice, E Dorset Webmaster

 

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