MND Matters Episode 26: What is motor neurone disease (MND)?
What is motor neurone disease? Is there a cure? What causes it? Who does it affect? In this episode, our host Helen, is joined MND Association Head of Research, Dr Nick Cole. They discuss the basics about motor neurone disease and try to answer some of the most frequently asked questions about the disease. The Education and Information team at the Association produce high quality information for people living with and affected by MND, including carers, children and young people. The resources cover a wide range of topics, including daily living, symptom management and quality of life. Our care information is accredited by PIF Tick, the only UK quality mark for trustworthy health information. We also have a wide range of resources and educational opportunities to support health and social care professionals working with people with MND. Downloads of our publications are available from our website at www.mndassociation.org/publications. If you're living with or affected by MND and need advice or support, contact our MND Connect Helpline on 0808 802 6262 or mndconnect@mndassociation.org. Following the recording of this episode, the Food and Drug Administration (FDA) in the USA have announced that they have approved an MND treatment called Tofersen (Qalsody) for the treatment of SOD1 MND in the United States. SOD1 MND is where there is a mutation within the SOD1 gene and accounts for around 2% of all MND cases. This news is a significant step forward in the fight against MND and further highlights the commitment and dedication of the MND community in finding effective treatments. Tofersen is currently not approved in the UK. However, it is being reviewed by the European Medicines Agency to see if the treatment could be approved in the UK and Europe.