Motor Neurone Disease Association: Recent Episodes
Motor Neurone Disease Association
Audio updates from the Motor Neurone Disease Association. We improve care, fund and promote research and campaign and raise awareness of behalf of people in MND.
Our Chief Executive Sally Light: 'The APPG report provides the evidence we need to go to decision makers.' www.mndassociation.org/appgreport2015
Evelyn is an Association Visitor and volunteer for our South London Group. She says: 'I hope MPs will take on board what they have heard today.' www.mndassociation.org/appgreport2015
Katherine says: 'There are no great surprises in this report but this is a really great starting point for all the neurological charities.' www.mndassociation.org/appgreport2015
Greg is a Campaign Champion. He said: 'I'm here today to speak with MPs so that we can get this information out there and improve this dire situation.' www.mndassociation.org/appgreport2015
Neil said: 'We've had some very moving stories about the impact of this disease and the supply of vital equipment.' www.mndassociation.org/appgreport2015
Helen is a speech and language therapist and has worked with many people living with motor neurone disease. She says the situation has to change. www.mndassociation.org/appgreport2015
Charlie is the face of our Voice campaign. She is living with MND and knows first-hand the importance of getting the right comms support when it's needed. www.mndassociation.org/appgreport2015
Chair of the All Party Parliamentary Group on MND, Madeleine Moon MP on the launch of a new report into access to comms support.
www.mndassociation.org/appgreport2015
Campaigner Katy Styles on the launch of a new report which shows that people with MND are being denied access to vital communication equipment.
www.mndassociation.org/appgreport2015
'This report is a vital part of our campaign as we lead up to the General Election.'
www.mndassociation.org/appgreport2015
Director of External Affairs Chris James said: 'This report confirms what we already knew: people with MND are dying without a voice.'
Our patron, Charlotte Hawkins is the focus of our Radio 4 Appeal which will be broadcast on Sunday 25 January. Charlotte explains how important the support of the MND Association was to her family, while her father Frank was fighting motor neurone disease.
Dr Sharon Abrahams is a Senior Lecturer in Human Cognitive Neuroscience & Clinical Neuropsychologist at the University of Edinburgh. Her work focussed on screening for cognitive and behavioural change in MND.
Professor Shaw reflects on the year gone-by and wishes everyone in the #MND community a happy New Year.
Professor Talbot is a Consultant Neurologist and the Oxford MND Centre Director. Professor Talbot founded the Oxford MND Clinic in 2001. His research interest is in understanding the molecular basis of motor neuron and other neurodegenerative disorders.
Ammar Al-Chalabi graduated from Leicester University Medical School in 1989. He began at King’s in 1994 as a clinician scientist working with Professor Nigel Leigh, studying genetic risk factors in motor neuron disease. He was awarded an MRC Clinical Training Fellowship in 1995, through which he obtained his PhD in 1999, winning a prestigious international award (The Charcot Young Investigator Prize) for outstanding research in the field of amyotrophic lateral sclerosis. In 2000 he was awarded an MRC Clinician Scientist Fellowship. He became Professor of Neurology and Complex Disease Genetics in 2008 and is now Director of the King’s MND Care and Research Centre.
Heath Reed is an industrial and product designer. He has been working on the Sheffield Support Snood for over two years: http://bit.ly/1vqqBSU
Dr Brian Dickie reflects on day two of the Symposium. He spent time in the biomarkers session today and was excited by the work that is going on.
Barney Bryson is a postdoctural researcher at the Institute of Neurology at University College London. He performs research into motor function in ALS patients.
Pranetha Baskaran is a fourth year PhD student at King's College London and is attending her first symposium.
Read our live blog report - promising #MND biomarkers news from Dr Turner and Dr Malaspina: http://t.co/AYYOkuhlWL
Prof BuchmanBuchman (Cardiff University) was awarded funding by the MND Association for his research into the fused-in-sarcoma (FUS) protein. Read about his work on our research blog: http://t.co/K4Bo3iI7Al
Dr Ruxandra Mutihac is presenting her work as an oral communication on day two of the Symposium. Ruxandra is using induced pluripotent stem cell technology to further our understanding of MND.
Dr Pietro Fratta (University College London) is a recipient of a Medical Research Council/MND Association’s Lady Edith Wolfson Clinical Research Fellowship.
Victoria Pugh is studying for her PhD at the Universities of Bradford and Reading, which is funded by the MND Association. Under the leadership of Prof Marcus Rattray she is looking at the drug riluzole and how to make it better.
Phillipa carried out her PhD at the University of Edinburgh’s Psychology school. Her research interest focuses on dysarthria and damaged voices in MND and she is working on the voice banking project which aims to provide personalised synthetic voices for patients with MND.
We talked to Anna Reeves of ACE (Aiding Communication in Education) Centre, which uses technology to help people with complex needs to communicate.
Dr Christopher McDermott is a Consultant Neurologist and a Co-Director at the Sheffield MND care centre. We spoke to him after a talk on assistive technology and MND at #alssymp.
MND Association Chief Executive Sally Light opens the 25th International Symposium on MND ALS in Brussels this morning. She said: 'I know the next three days are going to be really inspiring.'
Dr Al Sandrock, Chief Medical Officer at Biogen Idec asks: can we move more rapidly into clinical trials in MND research?
George Aynsley is a researcher at Liverpool University. His work is focussed on quality of life and MND.
This is Chris Maden's 10th Symposium. He works in the MND Association Conference team and makes sure the event runs smoothly.
Jenny Rolfe talks wheelchair projects and poster presentations at #alssymp. She is a Senior Occupational Therapist at our Oxford MND Car Centre.
Kaye Stevens is the Care Information Manager at the MND Association and was in Brussels to present on the End of Life Guide: http://www.mndassociation.org/news-and-events/Latest+News/end+of+life+guide+launched
Steve Bell is the MND Association's Director of Care (North) but he also plays an important part in the ALS / MND Alliance which organises Alliance Meeting and Professionals' Forum each year.
Rachel Patterson is the Co-ordinator for the International Alliance of ALS/MND Associations.
Head of Research Belinda Cupid is on her way to Brussels in Belgium as part of our Research Development team. They will be reporting LIVE from Brussels from Friday to Sunday.
Samantha and Amanda O'Shea speak to BBC Radio Wiltshere's breakfast show about their incredible efforts to raise money and awareness in memory of their late father and husband, Martin. So far the family have raised over £25,000. Audio courtesy of BBC Radio Wiltshere.
Karen Pearce, Director of Care (South) at the MND Association speaks to the BBC Radio Wiltshere breakfast show about the work of the organisation. Audio courtesy of BBC Radio Wiltshere.
Alison Aviss (AV and Chair of the MND Association's North Wiltshere Branch) speaks to BBC Radio Wiltshere about the fundraising efforts of the O'Shea family and the work of her local branch. Audio courtesy of BBC Radio Wiltshere.
Former Aldershot Town player Paul Shrubb talks to Shots Radio's Tommy Anderson about life as a player, manager and living with motor neurone disease.