Latest News for Cambridgeshire

Notice concerning the COVID-19 outbreak.

We are aware that the spread of coronavirus in the UK may be causing concern. Our priority, as always, is to ensure that everyone affected by MND has the most up to date advice and the support they need and that their health is not put at risk by our actions.

With that in mind, if you are living with MND or you are caring for someone with MND please discuss any specific concerns you have with your health and social care team. They will be able to give you advice and information which takes into account your specific circumstances.

You will find links on our dedicated website hub to the organisations providing the most up to date information.

A number of branches and groups have already suspended their get togethers, meetings and support groups to reduce the risk of spreading the virus to people with MND or those in contact with them. Our teams have discussed the ongoing situation with neurology consultants and MND specialists in our care networks and, on their advice, we are recommending that all branch and group meetings where people living with MND and their carers are present taking place before the end of April are suspended. Of course, we will continue to monitor and review the situation and update you if advice changes.

Our advice is also that AVs and other support volunteers should where possible try to avoid face-to-face meetings with people affected by MND for the time being to minimise the risk to those most vulnerable to this virus.

We realise that branch and group get togethers and AV visits are a valuable source of information, social interaction and support. Do please consider alternative ways of keeping in touch with each other, perhaps by phone calls, emails, Facetime, Skype, social media etc as we want our community to stay connected and in touch.

If you need further support our helpline MND Connect – 0808 802 6262 - is available Monday to Friday between 9am and 5pm and then 7pm to 10.30pm.

This is a fast changing situation, and we will review the situation and government advice regularly and keep in touch with you throughout.

A rewarding way to make a difference

“Being a Motor Neurone Disease Association volunteer is a very rewarding role. It gives me a boost when I have made a difference for someone living with MND”.

Do you enjoy listening to and helping people? Do you have skills which you could share to help support the work of your local Branch? Are you looking for a volunteering role which fits in around your family, work, studies and other commitments?

The Cambridgeshire Branch of the MND Association is currently looking for volunteers to support its work. Roles available include:

Care Support Volunteers:

Association Visitor

By giving just two to four hours a week, Association Visitors can have a huge impact by offering confidential emotional support. As an Association Visitor you would maintain contact with people with MND, their families and carers by phone, email or face to face visits.

Care Service Navigator

By offering support, accurate information and help to access the right services and equipment, you can enable people affected by MND to live their life more easily and to make informed choices.

These roles are challenging but rewarding. Full training and induction provided.

For more information about Association Visitor or Care Service Navigator roles please contact Liz Cooper our Area Support Coordinator on 0345 375 1827 or e-mail Liz.Cooper@mndassociation.org

Branch Roles:

General Branch Support

The Branch would appreciate support with general duties such as helping set up the venue for local Get-Togethers, admin, bucket shaking and other duties to raise funds. If you have limited time any one of the above would be appreciated.

Support and induction provided by branch committee members for any of these roles.

For more information about the branch roles please contact Chair, Cynthia George by e-mail c.i.george@icloud.com or telephone on 01954 202095/07515 534430.

Find out more about MND and our volunteering opportunities.

40th Anniversary Service at Peterborough Cathedral

The Cambridgeshire Branch held an Anniversary Service at Peterborough Cathedral on Saturday 5th October to commemorate 40 years since the start of the Motor Neurone Disease Association and to remember those we have lost to this disease.

The service was organised by Simon Crooke in collaboration with Canon Dr Rowan Williams, Precentor at Peterborough Cathedral. It was attended by three local Mayors: the Mayor and Mayoress of Huntingdon, Councillor and Mrs Stephen McAdam; the Mayor of Whittlesey, Councillor Mrs Julie Windle and her consort, Mr Robert Windle; and the Mayor of Wisbech, Councillor Michael Hill. We received apologies from the Deputy Lord Lieutenant, Karim Khalil, QC, who had a family crisis at the last minute.

The Gildenburgh Choir directed by Celia Johns, sang two items: ‘You will always need a time for reflection’, words and music by Alan Simmons, and ‘When I am down and oh, my soul’s so weary… You raise me up, so I can stand on mountains...’, words and music by Brendan Graham and Rolf Lovland. Both were sung beautifully and were very touching.

During the service three appropriate hymns were sung with Val Kay, a carer to her husband Paul, reading from Psalm 46 ‘God is our refuge and strength’. Our grateful thanks to Val for volunteering to read for us. There was a poem read by Sue Hallifax, our Association Visitor: ‘You can shed tears that they are gone, or you can smile because they have lived’; a further Bible reading from St John’s Gospel, the story of Lazarus of Bethany by our Branch Chair, Cynthia George. The service finished with Prayers from different religious traditions followed by the hymn, ‘We would be one as now we join in singing… We would be one in building for tomorrow… We would be one in living for each other...’, and a Blessing.

The service was followed by a delicious buffet where everyone could chat with old and new friends. We were delighted to see many old friends and many of those who regularly attend our Get-togethers and that they were able to join the Committee and Association Visitors to make this a special and memorable day.

Last but not least, we are very grateful to Simon Crooke, our Branch Fundraising Coordinator who not only organised this whole event in the midst of his own family bereavement, but also expressed his own personal reflection having lost his wife, Susan, to this disease several years ago. He said he has much confidence in the research being undertaken throughout the world. His great hope is that there will be a cure for MND long before the 50th Anniversary of the Association.

Maire Collins, Branch Secretary
Veronica Angus, Committee member
Cynthia George, Branch Chair

40th Anniversary of the founding of the MND Association

The Association has produced an interesting and informative poster showing the growth of the organisation since its formation in 1979.

Cambridgeshire AGM

Presentation by Dr Kirsten Kelly, Research
Programmes and Partnership Manager at the
MND Association.

Kirsten gave a presentation entitled “Research, Past, Present and Future”. She began by telling us that Jean-­Martin Charcot was the first person to diagnose the disease (between 1865 and 1869) when he discovered that ALS/MND was a distinct disease. He first used the name Sclerose Laterale Amyotrophique in 1874.

Despite our greater understanding of this disease, his original descriptions of the associated clinical and pathological findings of ALS have remained virtually the same. Kirsten talked about the MND genes and the research undertaken under the auspices of the MND Association. As at 2019, of the 30 genes causing MND, 10% are familial and 90% sporadic.

The Association was formed in 1979 and the first research project undertaken in 1980 with the first research paper entered in the Journal of Neurology in 1983. In 1996 the Research team headed by Brian Dickie had awarded 8 grants and at the same time the first and only drug, Riluzole, was available in the UK. Currently there are 90 projects and grants being undertaken by the MND Association, broken down into Project grants (Biomedical and Healthcare), PhD studentships, Clinical Research Fellowships, Non Clinical Fellowships and other small grants, and the Association also works with the Marie Curie Partnership. A Research Information Sheet is available on the MND Association website.

All this and much more was illustrated by Kirsten in a series of slides showing very clearly what was being undertaken. She also talked about the MND Register. Finally she talked about Gene Therapy including the first faulty gene SOD1.

This presentation was very clear and we all appreciated the information we were given.

Cambridgeshire County Council adopt MND Charter

After a lot of hard work by Fred Smith, one of the branches AVs, and Councillor Amanda Taylor, it was a pleasure to attend Shire Hall, Cambridge to listen to the full council debate the MND charter.

On Tuesday 17th July Fred Smith, Sue Halifax and myself were present when Councillor Taylor entered a motion to the full council asking them to adopt the MND charter. After a short speech from Amanda there was a secondary speech and one other that resulted in a show of hands for those in support of the adoption. It was with great relief to Fred that every single hand in the chamber went up.

This puts Cambridgeshire County Council in line with the Peterborough City Council in adopting the charter.

Big thanks must go to Fred Smith for pushing this to its final outcome along all the work he does as an AV. And of course a huge thanks go to Councillor Taylor for all her hard work in getting all the political parties to back the adoption of the charter.

The next move is to get Cambridge city council, Fenland Council and Huntingdonshire Councils to adopt the charter as well. So come on people push your local councillors to put the motion forward to your councils to adopt the charter.

Simon Crooke
Fundraising and financial support Officer

2015-16 Spending the Ice Bucket Challenge windfall

This year has been a record year for expenditure, with an additional £7m research costs reflecting our Ice Bucket Challenge commitments. The project we have invested will run from one to five years and include: whole genome sequencing, MIROCALS (drug trials), biomarker studies, more studentships, PhDs and fellowships.

By investing across all our missions areas in this way we are able to develop key services including the introduction of the carer’s grant, support for benefits, dedicated support for education and also for children and young people. Once again legacy income was a significant proportion of our total income with £4.4million left directly by generous benefactors to the Association and also £93,000 left directly to our branches and groups.

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262