Margaret Mullane MP kindly took the time to speak with The Motor Neurone Disease (MND) Association at this year’s Labour Party Conference.
Motor Neurone Disease (MND) is a fatal, rapidly progressing disease that affects the brain and spinal cord. While symptoms vary, over the course of the illness most people will be trapped in a failing body, unable to move, talk, swallow and ultimately breathe.
In the UK, more than 5,000 people are currently living with MND, and on average six people are diagnosed with the disease every day. Of those diagnosed, MND kills a third within one year, and more than half within two years. There is no cure.
Unfortunately, there can be inconsistent access to genetic testing within the NHS for people living with MND and their families. This means families can face uncertainty and delays in accessing targeted clinical trials and emerging treatments for genetic forms of MND.
Despite this, there have been new ways of helping people with MND. Such success includes Tofersen, a ground-breaking treatment for a specific cohort of people with MND that has been shown to significantly slow down and even halt disease progression, giving people with this type of MND more time to enjoy life with family and friends. It represents the first major breakthrough in MND treatment for thirty years.
These new treatments have the potential to change what is possible for people living with MND, and will make a huge difference if the NHS is ready to deliver them.
Margaret will ensue further engagement with the MND Association, as she recognises political support will be crucial in ensuring the provision of Tofersen and looks forward to continue working with them to help support people with MND and inform her work on the area.