The Motor Neurone Disease Association has appointed its first head
Laura Simons, former senior public affairs officer at the Consumers’
Association, will be heading up a team of ten people, reporting to chief
executive George Levvy.
Although the main focus of the organisation remains care and research
into motor neurone disease, Simons wants to raise awareness of both MND
and the association.
Simons’ appointment follows a survey of MND sufferers to establish what
role the association should play.
’People with MND wanted us to raise awareness and particularly target
health and social care professionals and policy and decision makers,’
Motor neurone disease affects the nerve cells in the brain and spinal
cord which control muscles. The damage to the nerve cells results in
muscle wasting, which eventually leads to an inability to function
’Seventy-seven per cent of people have heard of the disease but
understanding is very low,’ said Simons.
The association runs an information service and helpline which receives
over 4,000 calls per year.
The MND Association is currently providing support to the BBC, which is
due to start shooting a film about an MND sufferer in June, starring
Helena Bonham Carter.
’We are working very closely with Helena Bonham Carter and the rest of
the team on how MND would affect the character,’ said Simons.