Liane Iles: Motor Neurone Disease

Our guest speaker today was Liane Iles, Co-Founder of the MND Foundation, which was registered as a charity last year. Motor Neurone Disease is a progressive and incurable disease affecting about 1,100 new patients per year. The average life expectancy of an MND sufferer is just 27 months from diagnosis, with about half dying within a year. The average age at diagnosis is 55 but an increasing number of people are being diagnoses in the twenties and thirties. Many doctors will only come across one case in the course of their careers.

The Foundation works with other charities, the NHS, hospices and researchers to address needs which are currently unmet and to provide sufferers and their families with support from the time of diagnosis. One of its visions is to establish regional centres of excellence where all the specialists needed to treat MND are together in one place. At the moment a sufferer may need to consult up to eight different specialists, requiring eight separate appointments.

To start with the Foundation is concentrating its efforts in Essex. In addition it is funding an MND clinician within the Queen Square Neurology Team in London, This facilitates the administration of Tofersen to those with the genetic form of the disease, where it has been shown to slow the progression of the disease.