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Paul Mayhew-Archer speaks at the AGM
Members' Day and AGM 2018

Parkinson's UK Members' Day and AGM 2018

Nigel Hamilton and Jonathan and Sally Bromley attended the national charity's AGM and Members' Day in Birmingham on 20th October. Paul Mayhew-Archer acted as VIP Host, kept the proceedings on track and provided light relief and wise commentary in his inimitable style - see photo.

A chance to meet Head Office staff and Trustees

Throughout the day there was a strong sense that Trustees and Head Office are making a real effort to listen to, and understand, the concerns of local groups and volunteers. A good example was that staff and Trustees made themselves available for discussion and to share views during the breaks. One of the most recently appointed Trustees, Gary Shaughnessy - who has Parkinson's himself - has already agreed to join us for our January 2019 Branch meeting.

Reshaping and expanding the charity's membership

For a year or so now, Parkinson's UK has been working on a project to develop a new face for membership of the charity, with the working title Growing a Movement. We heard more about progress with this project, including an interesting comparison with the very successful Dementia Friends initiative that has already recruited nearly 3 million people as loosely-connected supporters of the Alzheimer's Society.

Celebrating succesful volunteer initiatives

In the morning session we learnt about the Live Loud! project that has been developed over recent years by volunteers in South Wales. A group of lead volunteers told us about the exciting results they have achieved, and even got the whole audience to take part in an exercise. We were very impressed that this important work has been developed entirely by grass-roots efforts, and we liked the thoughtful and rigorous way in which the organisers monitor its effect on participants. We plan to keep in touch with the South Wales team and try to learn from their success.

In addition to the article on the Parkinson's UK website that we've already mentioned, you can get more information from this presentation by researchers at Cardiff Metropolitan University, who involved student Speech and Language Therapists in the work.

Research update

Dr Arthur Roach, the charity's director of research, reported on progress with Virtual Biotech and other initiatives. These are all about Parkinson's UK trying to use its funds as effectively as possible by providing seedcorn funding for promising projects that would otherwise not get off the ground. We learnt that Parkinson's UK is also involved in later-stage drug development (clinical trials as far as stage 2), and Dr Roach noted that it's impossible to pick the winners every time, so it is important to close off projects that don't deliver promising results. A member of the audience asked whether the charity would benefit from future profits from treatments developed under these initiatives, and he confirmed that Virtual Biotech, like a venture capital investor, almost always negotiates a stake in the company - or a share in the intellectual property - as part of the funding for each project.

Helping volunteer groups to work together

For some time we have been urging Parkinson's UK to help us forge stronger links between volunteers in various Branches, so it was very pleasing to see the charity starting a conversation to give this much more emphasis. We saw great examples of collaborative working among Branches and other Parkinson's groups in the Greater Manchester and Lancashire areas.

We will continue to apply pressure to the central charity to develop tools and methods of working that will help us in such collaborations. Meanwhile we continue to develop informal links with other like-minded Branches near and far: in the past two years we have had active collaboration of various kinds with Banbury, Swindon, Bracknell, Newbury, Edinburgh and others.

Jem Appleton

Jem Appleton, August 2018

With great sadness we note the death on 29th August 2018 of our former Chair, Jem Appleton, surrounded by his family, after a brain haemorrhage.

Jem was a hugely loyal supporter of our Branch. As our Chair we fondly remember his impish wit, kindness, razor-sharp clarity of thought, and the energy and vigour he brought to our activities. After stepping down as Chair he continued to serve as Vice-Chair, providing wisdom, guidance and unwavering support to Sally and the committee. He organised many Branch events with flair and efficiency - lunches, holidays and, most memorably, the Wytham Woods barbecues, ably supported by his wonderful family. Many of us had the pleasure of seeing Jem on fine form at the recent barbecue.

Our sincerest sympathy and warm wishes go to Mais and their family.

Paul Mayhew-Archer at the Edinburgh Fringe

Paul's one-man Parkinson's comedy show at the Edinburgh Fringe was a terrific success, with full houses on most nights. A bucket collection at the end of each show yielded £5500 to be shared between Parkinson's and cancer charities.

The pictures here are from a reception hosted by the Edinburgh Branch that they kindly arranged for Paul on 13th August.

Paul, Julie, and Edinburgh Branch officers Reception for Paul and Julie Reception for Paul and Julie Reception for Paul and Julie

Our photo gallery

We're building a collection of photos of Branch activity on our Flickr photo sharing site. If you have photos you would like to share, or ideas for what we should include, please let us know at admin@oxfordparkinsons.org.uk or speak to any Committee member.

1st September 2017: Hamiltons Went North!

Fantastic news - Nigel and Debbie Hamilton completed their 350-mile, 2-week cycle trip from Oxford to Durham, exactly on schedule and with their fundraising at around £3500.

Cream Tea - June 2017

Sally’s Cream Tea afternoon in June, sponsored by The Cream Tea Society, raised over £1100. More than 110 scones were made for those who came! The Donkey House Players performed in their inimitable way.

Oxford Parkinson’s Disease Research Day - March 2017

On Monday 20th March the fourth Oxford Parkinson’s Disease Research Day took place in the heart of the University’s Science area in Parks Road. As members of the Oxford Parkinson’s UK Branch we were pleased to be invited to attend.

Read the report by Nigel Hamilton here.

Annual Christmas Concert - December 2016

Our Christmas 2016 concert in Christ Church Cathedral was a triumph, starting with a song from a choir of members called The Parkinsingers, and ending with the 800 people present singing 'On the First Day Of Christmas My Parkie Gave To Me' with words written by John Foster.

In between there was music from pianist Tom Poster, the singer Clemmie Franks and the choir Commotio as well as words from Ian Hislop, Rory Bremner and Paul Mayhew-Archer. Overall £16,200 was raised. See the Oxford Times article here.

Oxford branch speaker creates phone app to help spot Parkinson's symptoms

Dr Fahd Baig, one of the researchers working on this app, has spoken about his research at one of our branch meetings and at the Christmas concert. He presented his findings at the Oxford Parkinson's Disease Centre open day. Some members have been involved as participants in his project.

Fundraising

The final figure raised thanks to the Oxford Walk for Parkinson's in October 2016 stands at £23,000. This is a magnificent achievement - over 200 walkers took part despite the extremely wet weather. We will soon publish fundraising figures for the recent September 2017 Oxford Walk, which enjoyed much better weather.

With the Oxford Parkinson's Disease Centre (OPDC) in the city, this branch is kept informed of new projects and members are often volunteer participants in research. Raising funds for research is an important part of the activity of the branch. Recently donations have been made to the Brain Bank and to the GABA project at OPDC.

Please see our fundraising page for more details, and how to contact us if you have an idea for future fundraising activity.