Hello everybody,

The week just gone has seen a number of ups and downs but I’ll concentrate on a really big up in this post so that everyone who is really interested gets to see it.

You may remember a while back our mentioning to you that we were launching a campaign to raise awareness and hopefully funds to further the cause of finding a cure for MND. We are delighted to say that the campaign has started with our first interview and photographs being published in the Yorkshire Post.

I have included at the bottom of this message the link to the article on the Yorkshire Post website, but for those of you who are only able to view this electronically the actual newspaper carried a banner and photograph on the front page above the fold in full colour, a synopsis on page 3 of the main paper, photograph and title on the front page of the Life and style section and a two page colour spread inside. We never expected our piece to be awarded such prominence in the region’s most popular newspaper, and we send a heartfelt thanks to the author, the editor and all at the Yorkshire Post for giving our campaign such a great kick off.

Louise would like a point of note to be included in this message in order to correct one statement within the article. She wasn’t Snow Patrol’s stylist! She dressed them up as Eskimos about ten years ago but that’s about the extent of it!

The following link should take you to the article but in the event that it doesn’t a search for our names should get you there: http://www.yorkshirepost.co.uk/people/39It39s-too-late-to-find.4755111.jp

The other news is that with help from the Motor Neurone Disease Association a number of other publishers, newsgroups and magazines have expressed an interest in picking up our story. We’ll keep you posted.

Much love,

Neil

I hated it. My one regular sanctuary had been the local supermarket, which had a decent clothes section and a good coffee shop. My escapes to the supermarket had been getting longer and longer.

This day I walked into the supermarket, and there was my family on the front page of the very popular local newspaper with a huge headline saying ‘Save Our Son’. This was not what I had expected. Inside it carried two further titles, ‘For Our Son’s Sake’ and ‘It’s too late to find a cure for me, but not for my son’. I was horrified. Our story was not a ‘save our son’ story, I felt like we had taken valuable publicity space from parents who were waiting for an organ donation or needed funds to travel abroad for lifesaving treatment. This was not our intent when we started this thing that Neil was now calling a ‘campaign’.

I think I wanted to back out at this point, it was quite a shock to me to see that headline. We were going public because we felt that MND wasn’t in the general public’s awareness, and we wanted to raise the profile of MND for all those out there suffering. The fact that we had a familial strain in the family was not our main priority, ours was a more immediate need to throw MND in to the general consciousness. There are many diseases that show familial characteristics, most children grow up needing to know their medical history. The difference here is that there is no means of screening, no effective treatment, nothing that will arrest it in its development, no cure and no hope, with a two to five-year life expectancy after diagnosis. There isn’t even a known cause.

Once MND is on your radar, you find it very difficult to believe how many people don’t know about it. The reason for this is that there are no survivor stories.

I hated it but I knew we had done something worthwhile. From this moment on, the phone didn’t stop ringing with journalists. I don’t mean to sound ungrateful, they gave us a lot of space in the paper, and you can tell how excited Neil was by this. Back then I didn’t realise that without the pictures of Oscar, our story didn’t hold much weight. With future publications, if I tried not to include him, not many editors were interested.

This was another thing I would have to toughen up about. I just didn’t ever want to see ‘Save Our Son’ again. – Louise (2013)