***** Update 29-Feb-24 *****

A year on from my flight to Tokyo for the marathon (this year's event is on Sunday) I've been reflecting on the event, the amazing support you all gave and the year since. I need to correct one or two things from my original description, when I said that my running problems were likely down to "Long COVID", which coming at the back end of 2022 seemed a reasonable assumption, given that nobody could give me an alternative that fitted.  I was thinking that at some point I would get through it and get back to running in some form - maybe not what I was doing before, but something.

That was until October last year when I was finally diagnosed with Cardiac Amyloidosis, with underlying Myeloma. No, I hadn't heard of them either.  So far the only effect is that proteins are accumulating in my heart muscles, causing it to stiffen over time, and have to work harder. It fully explains why I had to walk so much last year and I certainly couldn't do that now. 

Like MND it's not curable but unlike MND there are treatments (chemo therapy and steroids primarily) that can put it into remission for a time in most people, until it returns when they start again.  It's possible the heart might recover from some of the damage during remission but that's rare and would be minimal in any case.  Medically my heart has already failed.  

That's pretty bad but then I look around the chemo infusion ward, I look at people like my friend with MND and I think actually there are a lot of worse diagnoses I could have had. The degenerative nature of MND and that for the vast majority with there's not even a meaningful treatment yet show that.  My friend with MND is still getting treated with Dr Sreedharan and progression of the disease has been very slow.  Given that many who have had it as long as he has haven't survived this long, to see him still walking and talking is just astonishing and listening to how they research and develop these treatments just fills me with awe. Being on a clinical trial myself now, I'm starting to see a little of the effort that goes into testing and actually making them available to more people.

I didn't set out writing this with the intent of raising more money, I just wanted to give an update to correct it - if you're asking people to donate money you have to be open and honest about everything, right?  But MND hasn't stopped being a devastating disease, and finding treatments that can help more than 2% is as important now as it was.  One day they might actually find a cure, wouldn't that be fantastic?  So if anyone wants to celebrate the anniversary of their donation with another to get us even further over the £5000 target that we achieved last March then I'd be overwhelmingly grateful.  That was 5x what I thought I might originally raise - you're all amazing people.

David, 28-Feb-24

***** Update 22-Feb-23 ******

Just a week until I leave for Tokyo.  The response here is amazing, far beyond what I thought was possible but I I should have had more faith in the strength of the cause and all the wonderful people who have contributed.  Thanks you all, it means a great deal.  I am determined to pay back that faith on 5th March - my running number (if anyone wants to track me) is 8080, but the start is at 10 past midnight UK time!

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You may have heard about Motor neuron disease (MND) recently, through the efforts of Rugby players Doddie Weir and Rob Burrows (who both had/have it) and Kevin Sinfield in raising both awareness and money to fight it. It's a devastating and fatal neurodegenerative condition. It causes progressive paralysis of limbs and muscles of swallowing and breathing, ultimately causing death, usually within three to five years. Up to 5,000 people are fighting MND at any one time in the UK and six people are diagnosed every day.

There is no cure.

But there