Public perception

[matthew55]

I listen to the radio a lot and all I hear is adverts for Cancer and Heart disease. If we can't get on something like gold or local radio where's the point? The amount of people I meet who have no idea what MND is. Maybe it's because we are a lost cause? 🤔🤗😘😍xx

[LindaB]

matthew55. Admin_MND
Good point....maybe we should have an ad campaign to raise funds & raise awareness across all media including TV.

[denise]

I saw mnd on the great North run.

[John D]

Andy Burnham, Manchester Mayor was running the GNR for Rob Burrow’s £5 million appeal for a new MND centre of excellence in Leeds. He was given the number 1 by the organisers.

[Banned]

I put this on yesterday but it seems that it is on its way to China!

https://www.bbc.co.uk/sounds/play/m000zdv3

People really don't appreciate us disabled anywhere on the media. It is just a fact of life.

What to do??

We really struggle just to get from one day to another. I just wish we had an Association that knew how to look out for us.

[matthew55]

That would make sense. 😡😤😉😁xx

[Admin_MND]

Hi all,

Thank you for your comments around raising awareness of MND and we are glad to see some of you have seen the recent coverage around the Great North Run and Rob Burrows.

We always showcase our latest campaigns and initiatives on our website, social media channels and through local and national press. There are also lots of opportunities for you to get involved too and help us raise even more awareness. You can find out more here https://www.mndassociation.org/about...eness-raising/ .

You may also be interested in signing an open letter which is being presented to Downing Street on Tuesday 21st through the United 2 End MND Campaign https://www.mndassociation.org/get-i...ed-to-end-mnd/ .

Many thanks,

Forum Admin

[Admin_MND]

I put this on yesterday but it seems that it is on its way to China!

https://www.bbc.co.uk/sounds/play/m000zdv3

People really don't appreciate us disabled anywhere on the media. It is just a fact of life.

What to do??

We really struggle just to get from one day to another. I just wish we had an Association that knew how to look out for us.

Hi Graham,

Just a reminder, you can share any feedback you have about us as an Association on our feedback form https://www.mndassociation.org/about...t-us/feedback/ .

Many thanks,

Forum Admin

[LindaB]

Hi all,

Thank you for your comments around raising awareness of MND and we are glad to see some of you have seen the recent coverage around the Great North Run and Rob Burrows.

We always showcase our latest campaigns and initiatives on our website, social media channels and through local and national press. There are also lots of opportunities for you to get involved too and help us raise even more awareness. You can find out more here https://www.mndassociation.org/about...eness-raising/ .

You may also be interested in signing an open letter which is being presented to Downing Street on Tuesday 21st through the United 2 End MND Campaign https://www.mndassociation.org/get-i...ed-to-end-mnd/ .

Many thanks,

Forum Admin

Brilliant coverage of all the above! Still a very good idea as mentioned in this thread (@Matthew55) to have an advertising campaign similar to cancer charities - are there any plans in the pipeline for that?
Letter signed👍👍

[Shaun]

Just some general mumbling’s, why is running such a popular way to raise money, when the people who need help can’t really take part, sometimes I feel that it’s able bodied people showing off
A652713E-EC42-4855-A359-1184B4BDA72B.jpeg

[matthew55]

The para Olympics winds me up now that I'm disabled. They make it look like disability doesn't affect them. Public awareness is key.

[Ellie]

Shaun My sentiments too Shaun. I've learned though not to look the gift horse in the mouth, donations are donations...

A popular fundraiser here is the annual sponsored silence for MND. xx

[Banned]

Is it possible to back date the sponsored silence to... let's say 2011?

[Banned]

Hi Graham,

Just a reminder, you can share any feedback you have about us as an Association on our feedback form https://www.mndassociation.org/about...t-us/feedback/ .

Many thanks,

Forum Admin

Thanks for reading my post.

I've provided feedback that I struggle to use this forum. Moreover I am struggling to type full stop, like many of us. A plug-in to this forum to assist with typing would be a great help.

Mindful of more distressing posts on this site this week I need to get back to the care app.

[matthew55]

I recently paid £120 for a MND banner for a boundary hoarding at a tiny cricket club in deepest Devonshire so I understand everything helps but a coordinated campaign using radio and TV is what is really needed.