National News

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News from the News

Tributes to Alan Horwell

TRIBUTES have been paid to Alan Horwell who passed away on 18th January, following a brief illness. As reported in December’s edition of The News, Alan had recently retired from the Board of Trustees due to ill health. His many contributions to the Association include not only his roles as trustee and vice chair, but also his involvement with the Isle of Wight Branch while Chief Executive of the island’s hospice, and as a supporter of the Northamptonshire Branch. Chair of the Board of Trustees, Mark Todd, paid tribute to Alan. He said: “The first thing to say is that Alan was a lovely man - thoughtful, kind and self-effacing. His huge contribution as Vice Chair, trustee and board member always focused on our goals of service to those affected by MND and building a world free of this disease. “He had been a great friend of the Association before he joined the board and retained his commitment after his illness finally drove him to Resign as a trustee. His wisdom, selflessness and empathy will be sorely missed.”
Mark continued: “Recalling his huge contribution makes me all the more aware of his family's loss. I know all his friends in the Association will be feeling for them at this time.”
Alan Graham, former Chairman of the Board, said Alan’s support to him and the Board ‘cannot be overstated’. “His experience, expertise, wisdom, determination, pragmatism, sound advice and personal strength have led to changes in the organization which will stand it in good stead for years to come,” he added. “Alan will sadly missed, but will be remembered by us all with gratitude and affection. “

The photo shows Alan Horwell in centre with Mark Todd to the right and Alan Graham to the left

Farewell and Welcome

Presentation: From left, retiring chairman Alan Graham is pictured with a thank you montage celebrating his achievements, with vice chairman Alan Horwell and new chairman Mark Todd.
ALAN Graham handed over the baton as chairman of the board of trustees to Mark Todd at our 25th Annual General Meeting (AGM) on 11 September.
Alan’s term of office came to an end after six years as chairman and 13 years on the Board of Trustees. He will continue to be involved with the Association, particularly in his role as branch treasurer. Alan told the AGM: “I have led us at many AGMs in reflecting on the year just gone, in particular its successes and achievements. This will be the last time I undertake this role. I am therefore particularly pleased to report that, over the past 12 months, we have made significant progress in achieving our plans for the Association, both in the short and long term. Despite the difficult economic circumstances in which we all currently find ourselves, you will be comforted and pleased to know that our fundraising income has held up, and that our reserves position is still strong.“
He added: “I look back on my term with satisfaction, pride and gratitude. I have felt privileged to have had the opportunity to meet and work with so many of our volunteers, the Association’s directors and staff, and trustees.“

Looking to the future

OUR new chairman, Mark Todd, served as MP for South Derbyshire between 1997 and 2010, and was the founding chair of the All Party Parliamentary Group for Motor Neurone Disease.
He served in this role from 2001 until his retirement from Parliament this year. Mark is also chair of NHS Derby City, which commissions and procures more than £400 million of NHS services for the people of the city. Addressing the AGM, he spoke of the importance of partnership working and knowledge sharing with other charities, care providers, researchers and other agencies.
Mark called for even closer working between national office and our branch and group network and described the White Paper on the future of the NHS as an ‘opportunity not a threat’ and a time to influence change.
The formalities of the AGM were followed by a presentation by Prof Nigel Leigh who reflected on his career in MND care and research and looked to future challenges.
Delegates were then invited to attend one of four workshops: research; fundraising; care; and volunteering. Finally, Kirstine Knox and trustee Jean Waters encouraged those present to get involved in our campaigning work to ensure our voice is heard. Mike Cronogue, from Walsall and Sandwell Group and Sheila Johnson, from Derbyshire Branch gave very motivating accounts of how they have got involved in campaigning locally.

800 to take part in clinical trial

A LARGE clinical trial to test the safety and effectiveness of a new drug called dexpramipexole (formerly known as KNS760704) is expected to get underway within the next few months.
Six centres in England will be recruiting participants with MND who experienced their first symptoms less than two years before the start of the trial. The 18-month trial, also known as the EMPOWER study, is being organized by a pharmaceutical company called Biogen Idec and will involve over 800 people with MND in total, recruited from ten countries across the globe. The six trial centres in England will be located in Newcastle-upon-Tyne, Sheffield, Liverpool, Birmingham, Oxford and London.
Although it is not expected to begin until mid-2011, awareness of the trial is already quite high among people affected by MND as it is being discussed on a number of internet forums. This may prompt queries to AVs, branches and groups. Recruitment for the trial has not yet started and we do not yet have contact names at the six UK centres. We know that the trial will only be open to people who have had their symptoms for less than two years before starting on the trial but other than that we do not have details of the criteria that people will need to meet in order to take part. However, as soon as we have managed to get hold of all of these details we will produce an information sheet for people affected by MND. This will be available to order from MND Connect or to download from our website at www.mndassociation.org/clinicaltrials. We will also include updates in The News.In the meantime, background information on the drug can be found at www.mndassociation.org/clinicaltrials as well as towards the end of research information sheet D ‘Clinical trials: what are they and how are they organised?’. The research development team at national office would be happy to answer any questions and can be contacted on 01604 611880 or at research@mndassociationorg People who are interested in taking part in the trial should also discuss it with their neurologist, or get in touch directly with one of the trial centres, once contact details have been made available.

25th Annual General Meeting and Conference

Saturday 11 September 2010
Nottingham Belfry

Report from June Lewis

Around 200 delegates attended this year’s meeting. These included amongst others, people living with MND (plwMND), their family members, friends, members of the Association, Volunteers, National Office (NO) staff and Trustees.

Alan Graham, Chair of the Trustees, started the AGM with his annual report. This was to be his last, as Mark Todd now takes on the role. The one day event is still thought to be a more appropriate use of resources but the format remains under review.

Alan reflected on the successes and achievements of the Association over the last year and said the Association is in a strong financial position despite the reduction in legacy income and interest rates.

12,000 plwMND had been helped, twice as many as last year
Satisfaction with support is high
The 19th Care Centre had had been opened in Middlesborough
Partnership with Multiple Sclerosis and Parkinson’s disease societies
Improvements without extra cost
Campaign for National Strategy launched
NICE guideline – NIV in England
Research: global leader in MND research - biggest stem cell research project; drug trials; 881 delegates at last international symposium; plwMND continue to donate DNA samples
Awareness campaigns: Sarah’s story scooped many awards; new campaign – Patrick Joyce’s “Incurable Optimism”
Newest patron is Chris Woodhead

Alan concluded his address by expressing his satisfaction, gratitude and pride in having served as Chair for the last 6 years. He paid tribute to Kirstine Knox’s energy and compassion in her role as Chief Executive. He said it had been a privilege to have served and looked forward to ‘a world free of MND’.

Honorary Treasurer, David Gray then gave his report.

For year ended 31 January 2010, income was £11.70 as compared to £14.20 million the previous year
Expenditure up 16% to £10.8 million on previous year
Legacies down to £3.1 million compared to £5.5million last year
5year commitment to 26 research projects
For the 4th consecutive year Branches and groups raised over £2million

He then gave tribute to Alan Graham’s chairmanship.

Prof. Nigel Leigh gave the Keynote speech after the lunch break, titled “A Retrospective”

1869 – Jean Charcot, founder of neurological research in Paris, first named the condition which eventually led to dealing with it
1986 – very little research in UK and Europe; few centres with multi-disciplinary care; only Cicely Saunders’ hospice gave palliative care; no disease modifying therapy; some respiratory support but only by accident
1993 – breakthrough: discovery of SOD1 gene in familial MND
2010 – still do not know how SOD1 mutation causes motor neurones to die; is Riluzole of great use? BUT
more international collaboration
greater understanding
new trials
dawn of biomarker age and stem cell era
survival has improved because of better care including use of PEG and NIV

Prof Leigh’s final statement was “We will find a cause for MND and there will be treatments”

Kirstine concluded the conference with a call for support for a National Strategy.

Increasing no. of plwMND due to an ageing population
Society has changed – people living on their own; English is second language for many; interactive communications and social networking
Increasing need by plwMND for support from Association, especially with the prospects of upcoming spending cuts
England, Wales and Northern Ireland have differing needs
Reform of GP services

The petition presented to 10 Downing Street in June 2010 had 18,345 signatures. Since then over 4,000 individual post cards have been sent to David Cameron but 10,000 are needed to make more of a difference.

LEGACY PRESENTATIONS TO BRANCHES
HAVE YOU HEARD THE ONE ABOUT LEGACIES?

In May and June, pilots were undertaken in giving a short talk at branch and group meetings to help raise awareness of just how vital legacies (gifts left to us in supporters’ wills) are to our work; how easy it is to leave a legacy, and the important role that branches and groups can play in spreading the word.

These talks, at South London, Manchester, Cardiff and Exeter also promoted the availability of a new MND Association Legacy Information pack (a sample was sent to each branch secretary in the June branch mailing). The talks now form part of the regional fundraisers’ function and they welcome invitations to deliver legacy talks at branch or group committee meetings. We depend almost entirely upon voluntary donations, and legacies have long been a vital element of that income. Their importance cannot be over emphasised. In recent years they have regularly accounted for over a third of the Association’s annual income.

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. Add to this the current economic climate, and there is concern among charities that the value of legacies may diminish and this could have serious repercussions.

The MND Association is fortunate in having very robust finances and other strong income streams, but with just 1 in 7 people making a will also including a gift to charity, we need to continue to ask our supporters to keep us in mind when considering legacies.

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.

So it is vital that all our supporters are aware of just how important legacies are to the continuing work of the Association, and who better to help us pass the message on than our branches and groups.

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 remembering people affected by MND by including a legacy to the MND Association in their Will.

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.

We need to get the message across to as many people as possible and the most effective and meaningful way is through word of mouth. If you have any thoughts or ideas we would love to hear from you and if you would like me to come and talk to you and your branch / group, please just ask. My details are:

Sarah Hampton, Regional Fundraiser South West including West Sussex
Tel: 01805 601 402 email: sarah.hampton@mndassociation.org

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

Click here for details of the online shop's Collection.

The National Office Website now includes a section of useful hints and tips provided by people living with MND. Find the link at www.mndassociation.org/hintsandlinks.

'ICE' IN CASE OF EMERGENCY

It may put your loved one's mind at rest. The concept of 'ICE' is catching on quickly. It is a method of contact during emergency situations. As mobile phones are carried by the majority of the population, all you need to do is store the number of a contact person or persons who should be called during emergency under the name 'ICE'.

The idea was thought up by a paramedic who found that when he went to the scenes of accidents, there were almost always mobile phones with patients, but emergency services didn't know which number to call.

Emergency Service personnel and hospital staff would be able to quickly contact the right person by simply dialling the number you have stored as 'ICE'.

Everyclick

Use ‘everyclick’ as your search engine and raise funds for the Motor Neurone Disease Association
If you use ‘everyclick’ as your search engine and nominate the MND Association as your chosen charity a donation is made for each search. Logon to ’www.everyclick.com’ for further information.