Reading Time: 6 minutes Global biotechnology company Biogen has announced plans to make tofersen, a potential treatment for people whose MND is believed to be driven by mutations in the SOD1 gene, available to more people on an early access programme. Biogen have also revealed that they are conducting a new Phase 3 clinical trial of tofersen in those…
Reading Time: 6 minutes Each year, MND Associations across the globe mark 21 June as a special day of recognition, acknowledging the impact that MND has on people around the world. MND is a global problem. It does not discriminate, and for every person diagnosed the effects of the disease will be forever felt by their families and friends.…
Reading Time: 4 minutes While the exact cause of MND remains unknown, two of the hallmarks of the disease are a build-up, or aggregation, of toxic proteins in motor neurons and the misfolding of proteins. Protein folding is the physical process by which a protein chain becomes biologically functional. If it doesn’t fold properly, it can’t function properly. These…
Reading Time: 3 minutes This is the first in a series of three blog articles from Session 7 – Perspectives: Lessons from COVID-19 in which we heard from different speakers about how the COVID-19 pandemic has impacted their own experiences of clinical trials, research, and support within the MND community. A further blog, written by Bruce Virgo who is…
Reading Time: 9 minutes A paper arising from research carried out at the University of Sheffield as part of the AMBRoSIA biobank, and in collaboration with the international Project MinE gene-hunting consortium, was recently published in the Journal of Neurology, Neurosurgery and Psychiatry. Researchers propose that a test for the most common MND genes could be offered to all…
Reading Time: 3 minutes A recently published paper, reviewing 15 studies that investigated the effectiveness of riluzole as a treatment for MND in real-time, has suggested that the drug extends survival in people with the disease for much longer than was proposed in the original clinical trials.
Reading Time: 5 minutes This blog is part of the ‘Highlights from Perth’ collection of articles, where you can read about the content of some of the talks and posters presented at the 30th International Symposium on ALS/MND in Perth. With this years International Symposium on ALS/MND now behind us, it is time to reflect on some of the…
Reading Time: 4 minutes This blog is part of the ‘Highlights from Perth’ collection of articles, where you can read about the content of some of the talks and posters presented at the 30th International Symposium on ALS/MND. All presentations have a code beginning with ‘C’ followed by a number (e.g. C50). This will help you locate the specific…
Reading Time: 5 minutes There are literally thousands of websites on the internet that make claims about amazing alternative or off-label treatments (AOTs) and even cures for MND but with little or no scientific evidence to back these claims up. This presents a real problem for people living with the disease who may want to try them. Are they…
Reading Time: 6 minutes ‘From antibiotics and insulin to blood transfusions and treatments for cancer or HIV, virtually every medical achievement in the past century has depended directly or indirectly on research using animals’ – from the Royal Society’s position statement on the use of animals in research. We know that talking about using animals in research is an…
