Journalist’s Guide to MND

Motor Neurone Disease: one person dies every four days from this devastating disease

Welcome to the IMNDA’s news room, an on-line resource for journalists and media. Our aim is to encourage accurate and balanced reporting about Motor Neurone Disease, the IMNDA, and the issues that affect people with the condition.

The IMNDA Press Office provides information to journalists on a wide range of issues associated with living with MND.

For media enquiries please contact:

Derbhla Wynne or Maeve Leahy
PR & Communications Department
pr@imnda.ie
Tel: 01 873 0422

MND is the name given to a group of related diseases affecting the motor neurones (nerve cells) in the brain and spinal cord. As the motor neurones gradually die, the muscles stop working.

MND is a rapidly progressive, fatal disease that can affect any adult at any time. The cause of MND is unknown and there is no known cure.

Approximately one in 50,000 will develop MND in any one year, with an average of 300 clients in Ireland at any one time.  Life expectancy for most people with MND is just two to five years.

MND leaves people unable to do the everyday things that the rest of us take for granted, such as walking, talking, swallowing become virtually impossible. People with MND can still think and feel, but their muscles won’t work.

MND was first described in 1869 by French neurologist Jean-Martin Charcot. In the USA and other countries it is known as ALS (Amyotrophic Lateral Sclerosis).

Rilutek (riluzole) is the first and, to date, only drug licensed for the treatment of Motor Neurone Disease.  It is not a cure, it does not prevent, halt or reverse the disease but it has been shown to have an effect in extending life in both the limb and bulbar onset forms of MND.  In studies, people with MND taking Rilutek were shown to have an increased life expectancy.

Famous people who have died of MND include Actor Cyril Cusack, Actor Joan Brosnan Walsh, RTE Sports Broadcaster Colm Murray, Munster Head of Strength & Conditioning Paul Darbyshire and Former Shamrock Rovers Player Paul Magee.

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Further information

For more information contact the Communications & PR Team
Derbhla Wynne/ Maeve Leahy

Telephone: 01 873 0422
Email: pr@imnda.ie