Latest News for Cambridgeshire

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
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40th Anniversary  of the founding of the MNDA

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

Download the poster HERE.

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 MNDA, 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 MNDA 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