Saturday, 31 January 2009

"Sarah's Story" - Raising Awareness of Motor Neurone Disease

Most days, I read the ALSTDI and PatientsLikeMe (PLM) ALS Forums and have done so for several years now. Why do I do this? I'll get to that later.

This morning, I came across a particular thread on PLM-ALS which rather struck me. Contained within it, are a few links including the one where I found, watched and read about Sarah's Story via the Motor Neurone Disease Association website.

After watching it a few times, I placed a link to the video at the Life Scientists room over at FriendFeed and left a comment at PLM to this effect.

Since you need to be a (free) registered member of PLM to access the Forum in question, I can't provide a link to the start of the thread. It reads:-

Hello All

I thought you might like to be aware that this afternoon the MND Association has just launched the first ever UK broadcast advert created to raise awareness of MND.

‘Sarah's Story' is our new awareness-raising campaign of the same name which we will roll out during 2009. The advert is currently being shown at over 50 independent cinemas across England and Wales.

Our hard-hitting advert features Sarah Ezekiel and after whom the campaign has been named, who of course is a regular contributor to patientslikeme. The film is intended to convey the emotional and physical impact of receiving a diagnosis of MND.

The 90-second film tells the story of a young woman who is suddenly ‘attacked' by MND. An actress plays the part of Sarah and as her body deteriorates, the actress's head is superimposed on the body of Sarah.

Its hard-hitting style is likely to shock some audiences. The aim is to stimulate viewers' curiosity to find out how they can help fight back against MND.

Our film has been created at virtually no cost to the MND Association, with extensive free support from within the advertising and film industries.

More information about the Sarah's Story campaign is at:
More information about the campaign including details of when and where the advert will be screened can be found at:

Very best wishes

MND Association

Whilst I don't know Sarah Ezekiel per se, I am aware of her, have had contact with her, and am certainly aware of her background and tireless activity as a Patient Advocate in terms of ALS/MND.

(I've blogged about ALS/MND previously here and here).

As a Patient Advocate myself with a genuine interest and now involvement in research in fields of this nature, I was particularly moved by this short film and wanted to help in whatever capacity I could.


"The Making of Sarah's Story" also fully deserves a watch too.

"The MND Association, creatives, actresses and crew discuss the rationale behind the making of this powerful film. ..."

Watch The Making of Sarah's Story in Educational & How-To  |  View More Free Videos Online at

A big big thank you to everyone involved in this.


Sarah said...

Thank you very much for blogging about Sarah's Story Graham. I think this campaign is very different and hope it will raise awareness of MND. I honestly believe that more awareness will lead us closer to a cure.

Sarah Ezekiel

Anonymous said...

my dad has recently died from complications assiciated with MND. He was a wonderfull father and husband and MND stole him away from us. To watch a healthy man deteriorate so rapidly is devastating. Before dad was diagnosed we had no idea about MND and although the advert is hard hitting it is a genuine representation of the symptoms .
Any awareness is fantastic and heres hoping a cure i'snt far away

deb said...

my dad has recently died after suffering from MND and the film does represent how a person is ravaged by the illness. We lost a healthy man who was full of life looking forward to retierment. He was a fantastic father and husband and MND stole him away from us. Before Dad was diagnosed we had little knowledge of the disease raising awareness can only help with a cure

natalie_faulds said...

I think this campaigne will ring true to everyone who's either personally been, or is connected to someone effected by MND. My father, a truely amazing man, died of MND back in 2000 and although it's been over 9 years ago now, a great deal of people are still unaware of the disease and how painful it is both physically & emotionally. Thank you Sarah and everyone involved, it must of taken a great deal of courage to do this. I have every faith that it will massively increase awareness and thus help to find a cure for this cruel disease.


Louisa said...

I was firstly made aware of the fantastic campaign 'Sarahs Story'when my Father who was diagnosed with MND, 3years and 4months ago,told me about it! After watching the video along with the making of the video I was amazed at how well the disease was portrayed. It certainly renched at my heart strings when I turned to my father immediately after watching it to see him and hear him say, 'That is EXACTLY how MND affects me'. Here in Norfolk we have no MND Nurses and the multidisciplinary team we have working alongside us have little or no knowlegde or understanding of this nightmare disease. This campaign really needs to be broadcasted to all the health proffessionals. I am incredibly passionate about helping my father and his fellow MND sufferers gain recognition. My best wishes to everyone and thanks to everyone supporting this campaign. Please don't give up gaining awareness.

Louisa x

McDawg said...

Thanks all for your coments so far. I might add that I've posted a more recent post about these issues on McBlawg, here This contains a number of active links that directly related.