55,000 to 1

Around 100 children a year are diagnosed with neuroblastoma in the UK. 90% of those are under five. The most common age of diagnosis is two years. There are approximately a million kids in the UK in each of the age bands 0-1, 1-2, 2-3, 3-4 and 4-5, which means that the odds of diagnosis in a child up to the age of five are about 55,000 to one. For a disease that is not well known, and even less well understood, those are not good odds. Factor in the most common diagnosis at age two and the odds there may be as short as 40,000 to one when the N word redefines what constitutes a normal family life.

I’d never heard of neuroblastoma until Vanessa Riddle’s story hit the news. And even then I didn’t really know what it was. Eventually, when Oscar Knox and Mackenzie Furniss were similarly afflicted, I started to take notice and LifeCycleForNeuroblastoma became a thing.

I mention all of this because I only found out about the disease when Jim McGinley was pushing the message on Twitter. Jim has 12,000 followers so his story reached an awful lot of people, people who, like me, were probably asking themselves “What is this thing neuroblastoma?

LCFN had around 800 followers on Facebook back in the day, and the latest incarnation is running at around a hundred, many of whom were with the journey the first time around.

But I was trying to estimate today, while I was out on the road, what the awareness impact of Ride2CureNeuroblastoma has been since day one. The reach outside of the website and the Facebook group probably runs to another seven or eight thousand through work, the Stewarton Review magazine, school visits, the Shotts prison gig, Strava, friends and family and casual acquaintances along the way: oh, and cycling in traffic: that must be worth a few hundred ever since I started wearing the Aussie R2C jersey as the top layer on every stage. The Irvine AFC shirt sponsorship is another avenue of awareness but as the shirts carry the web address of Solving Kids Cancer rather than a direct reference to the disease, that angle of awareness is less easy to quantify.

So let’s call it a total reach of ten thousand people: folk who are aware of neuroblastoma specifically through R2CN. It’s good, but it’s not up there alongside those odds of 55,000 to one, of your child being diagnosed with the disease by the age of five: there’s still work to do.

But next week, that awareness number’s going to change. Hammerhead, makers of the Karoo, the SatNav on your handlebars that’s taking the bike world by storm, are going to run the Ride2Cure Neuroblastoma story on their website. I haven’t a clue how many units they’ve actually sold, but I’m reckoning that maybe another couple of thousand folk will go onto their website for a casual poke about, with the possibility of buying a Karoo in the back of their mind, and they’ll read about how the device got me across the Outback in support of Neuroblastoma Australia. It’s purely a guesstimate, but I reckon that by the time the story eventually gets pulled, to be replaced by the next big thing, the R2CN neuroblastoma awareness stats will be up around 12K, and then we’re into Jim McGinley territory, and that’s starting to get decent.

I mentioned Strava in the awareness list because I’m on Strava with an air of anonymity. I ride as Ride2Cure Neuroblastoma, not as myself, and I use the segment leaderboards as free advertising for neuroblastoma awareness. Athletes by and large are competitive animals and even though I’m way out of my depth with the lycra brigade in the overall stakes, I’m always in with a decent shout within my own age band, which as we speak is 65-69. Basically, I go around seeking segments where I think I can do some damage by whacking Ride2Cure Neuroblastoma top of the (pensioner) pile.

I’m well aware of the fact that you can’t go chasing that stuff every day – the physical demands are just too great – but by being a wee bit savvy and using the conditions to your advantage, you can make some real hay when the sun ain’t shining. I’m talking in particular about storms, and hence high winds. Just so long as you can stay onboard the bike, the rewards can be substantial, as I discovered down in Troon, Barassie and Kilmarnock earlier this week.

If you know Barassie seafront, then you’ll know the road that runs from Morrison’s roundabout, along the shore before turning right up and over the railways line at the train station before carrying on through a set of traffic lights to another roundabout. That whole section’s about two miles and contains three Strava segments. Before Storm Brendan hit town, R2CN was in pole position on only one of them. Post Brendan, R2CN owns all three pensioner records, although I have to say that the run up the hill to the railway bridge was squeaky bum time as the margin of success was just a single second. The guys who I’m knocking off the top of these tables will know about neuroblastoma, even if they don’t know who’s actually behind it.

The major benchmark this week has been Stage 200 of Ride2Cure2. Never in my wildest dreams did I ever think I would crack 200 stages on the bounce: the only time I’ve ever got close to anything like that in my sporting career was when I managed to run on every day of a calendar year back in the mid 80’s. I also got ill a lot during that year: I wonder why.

The downside of having been out for the best part of three hours every day since last July is that I’ve acquired a niggling wrist injury that isn’t going away, and if anything is getting worse, day on day. I think it’s a tendon injury just hand side of the sticky out bone of my wrist. It’s almost certainly down to riding on the drop bars, which I do 90% of the time, with insufficient cushioning on shit roads. Today it was so bad that I found myself having to release my grip on the rough stuff before electing to take the bike into the pits on my way home: that’s code for nipping into Neil’s bike shop.

He’s double wrapped the bar tape on both drop bars, in order to provide a wee bit more cushioning, and we’ve altered the angle of the bars by two or three degrees down the way to put less strain on the outside of my wrist. I’ll give that a go over the next couple of weeks, and apply ultrasound between stages. It’s the best I can do without physically breaking the run.

The 7000 miles in seven months target is bang on schedule, so much so that I’m likely to crack that nut around the 29th of January. I’ve done 6K in six months before, but never 7K in seven, so I’m in no mood to let this one slip. A thousand miles in January has happened before, in the lead up to the Australian Ride2Cure in 2018, so I’m not that fussed about cracking that barrier if (a) I don’t need to, and (b) doing so would further aggravate an already injured wrist.

Tomorrow, as they say, is another day and 201 will become 202.


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