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Bute campaigners raise awareness of MND

The group took up their positions in Montague Street, while leaflets and wrist bands were distributed to curious passers-by.

The group took up their positions in Montague Street, while leaflets and wrist bands were distributed to curious passers-by.

 

Montague Street isn’t perhaps the number one place you’d consider having a lie-down in, but that’s exactly what a group of island residents did on Saturday morning, all to raise awareness of motor neurone disease.

The ‘GORON’ - a bit like the opposite of a flash mob - involved the group stopping in the street, lying down in silence and remaining like that for several minutes without moving a muscle. Since MND often leaves sufferers immobile and unable to communicate, the ‘GORON’ showed passers-by a glimpse of exactly what the disease does.

The idea came about from island resident, Bob Baines, whose mother died from the disease 18 months ago, after discussions with his sister who had decided to hold a ‘GORON’ in Oxford during MND Awareness Week (June 16-22).

Joining Bob and his family was Karen White, whose brother in law died at the age of 52 from the disease, and her family, as well as Allison and Elizabeth Harley and Jennifer Murray.

Bob told us: “It’s a cruel disease. People lose the use of their arms and legs, and lose the power of speech so they become, basically, trapped in their own bodies. When it eventually goes to the diaphragm it stops the ability to breathe, and that’s what kills.

“There is no actual test for it, it’s really a process of elimination in ruling out other diseases first, and it affects people at different speeds. Some people deteriorate really fast within six months, whereas others fight for ten years.

“But in any case, it’s a nasty, horrible disease.”

If you’d like to find out more about motor neurone disease, or would perhaps like to make a donation to the charity, click here.

 

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