MND / ALS
A first-of-its-kind Motor Neurone Disease Association Research Nurse Network is aiming to help those diagnosed with motor neurone disease (MND) to take part in clinical research and trials. MND is a fatal, rapidly progressing disease that affects the brain and spinal cord. The disease attacks the nerves that control movement so muscles no longer work, [...]
England rugby Super League player Rob Burrow was a tireless campaigner who helped raise awareness of Motor Neurone Disease. Burrow, former Leeds Rhino player, died on Sunday, 2 June aged 41 of Motor Neurone Disease (MND). After his diagnosis in 2019, Burrow dedicated much of his work to raising awareness of the disease, earning both [...]
With Motor Neurone Disease affecting more than 5,000 adults in the UK and survival rates on average of 18 months, there is an urgent need to find new treatment options. In this article, we sat down with Dr Brian Dickie, director of research development at the MND Association, which has just announced a £5 million funding injection to enable more patients take part in vital clinical trials. He shares his insights on the current state of research into MND and how the funding hopes to advance this. Unlock this article to read the full interview and learn more about: - Promising lines of investigation and potential treatment pathways for MND - How gene therapy is leading to some "never seen before" results - The role AI can play in helping to manage the condition
The MND Association is investing £5m into building a network of research nurses aimed at enabling everyone diagnosed with the disease to take part in vital research. The charity will build "a coordinated network of MND Association research nurses" across England, Wales and Northern Ireland, with the first nurses expected to be in post by [...]
Coya Therapeutics has further advanced towards clinical trials on its potential therapy for the treatment of amyotrophic lateral sclerosis (ALS).
The company announced that it has held successful pre-IND (Investigational New Drug) and Type C meetings with the US Food and Drug Administration (FDA).Verge Genomics, a biotechnology company using artificial intelligence (AI) to develop new treatment options, has announced the launch of a new study for the treatment of sporadic and familial forms of amyotrophic lateral sclerosis (ALS).
The study will assess the safety and tolerability of escalating doses of VRG50635, a small molecule inhibitor of PIKfyve, a therapeutic target for ALS discovered in diseased human tissues using CONVERGE®, the company’s all-in-human, AI-powered platform.The three main UK charities supporting those affected by motor neurone disease (MND) have set out their priorities for 2024, with a focus on getting new treatments to patients. The MND Association, My Name’5 Doddie Foundation and MND Scotland say they will work together this year to combine voices, knowledge and expertise in a bid [...]
Pharmaceutical company, Ferrer, has announced that its phase III clinical trial in Amyotrophic Lateral Sclerosis (ALS) patients did not meet primary or key secondary endpoints. The ADORE clinical trial is a multi-centre, multinational, double-blind, randomised, placebo-controlled phase III study to investigate the efficacy and safety of 100 mg edaravone (FAB122) once daily as an oral [...]
Researchers have shed new light on the causes of ALS through an investigation of a molecular anchor called VAP (vesicle-associated membrane protein-associated protein).
When experiencing new things, the structure and function of our neurons and their connections are rapidly being remodeled. This process, known as synaptic plasticity, is critical for us to learn and adapt. However, these changes require a lot of energy. Fortunately, our neurons are well-adapted to support these changes. Biological batteries known as mitochondria are strategically stabilized near sites of synaptic remodeling to ensure a local and efficient energy supply. However, how mitochondria are anchored near synapses was not known. A team of scientists at Max Planck Florida Institute for Neuroscience has now identified a molecular anchor called VAP that stabilises mitochondria near synapses to support these remodeling projects. The identification of VAP as a molecular anchor has particular significance because a mutation in VAP leads to ALS (amyotrophic lateral sclerosis), a progressive motor neuroe degeneration disease. This discovery, published in Nature Communications, not only sheds light on how memories are powered but opens up new research directions into ALS pathology.People living with motor neurone disease (MND) can now create bespoke digital artwork through an artificial intelligence (AI) art platform which harnesses the power of eye-gaze technology. Budding artists can quickly create and share bespoke artwork with just a few clicks by using the Mind’s Eye platform, which has given new opportunities for people with limited mobility to unleash their artistic talent. As well as sharing creations with friends and family, the tool can offer an alternative way of communicating and expressing thoughts and feelings.













