Latest News for Cambridgeshire
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.
Presentation by Dr Kirsten Kelly, Research
Programmes and Partnership Manager at the
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.
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.