Reading Time: 4 minutes After its successful premiere in 2017, the University of Oxford organised another meeting of people affected by inherited MND, called ‘Families for the Treatment of Hereditary MND (FaTHoM)’. This turned out to be yet another excellent day where MND clinicians-researchers presented on topics such as genetics of MND, genetic testing and gene therapies. Below you…
Reading Time: 10 minutes “The annals of ALS clinical trials is strewn with failed studies. Only two out of more than 70 clinical trials have been positive, and even these showed only very modest benefit. Is this dismal record strictly due to the extraordinary complexity of neurodegenerative disease in general, and ALS in particular? Or is it due to…
Reading Time: 2 minutes Swallowing problems are an incredibly common cause of malnutrition and weight loss in MND patients. To add to this, weight loss in MND is associated with shorter survival. This means managing swallowing problems effectively is crucial to ensuring people living with MND can have the best possible quality of life. Managing swallowing problems using gastrostomy…
Reading Time: 3 minutes Whilst the vast majority of MND research happens in the lab, there is also an increasing amount of research activity looking into how best to manage the various symptoms of the disease. There are a lot of unanswered questions as to ‘What Works and What Doesn’t?’ and without a decent level of evidence, it is…
Reading Time: 2 minutes We know that neck weakness can be a difficult symptom to manage in people with MND, and that the current offering of neck collars and supports do not always suit everyone. In order to come up with a solution to this, we are funding Dr Chris McDermott from the Sheffield Institute for Translational Neuroscience (SITraN)…
Reading Time: 5 minutes Different ways to support breathing were the main focus of the second clinical session on day two of the Symposium. Researchers from two MND Association funded studies presented their work looking at diaphragm pacing and also the withdrawal of ventilation support. Diaphragm pacing The NeuRx diaphragm pacing system (DPS) is a device developed to aid…
Reading Time: 3 minutes Update (February 2017): All sites are now closed and not recruiting for participants. If you would like to be added to a waiting list for the Sheffield Support Snood, please contact Lise Sproson. We are funding, together with the NIHR i4i (National Institute for Heath Research invention for innovation) programme, a research team in Sheffield who have developed a new type…
Reading Time: 5 minutes Results from the UK clinical trial of diaphragm pacing in MND/ALS (known as DiPALS) were published online today in the journal Lancet Neurology. DiPALS was the first randomised clinical trial of diaphragm pacing in MND and aimed to find out whether or not diaphragm pacing was beneficial when added to the current standard treatment of…
Reading Time: 3 minutes During the second day of the symposium Association-funded researcher, Dr Chris McDermott, presented his highly anticipated research on a new neck support for people living with MND. Our healthcare research aims to lead to better symptom management and support for people living with MND. We know that neck weakness is an extremely distressing problem in…
Reading Time: 3 minutes This year’s Annual Conference research talk was given by Dr Chris McDermott and focused on his research at the Sheffield Institute for Translational Neuroscience (SiTraN). His talk, adequately named ‘Improving the care and evidence base for symptomatic care’, was a very personal and informative talk to all that attended. Dr McDermott gave a brief introduction…
