I’m not quite sure how this will work out because I’ve never written the blog entirely on my phone before. But two things happened this week that made me sit up and take notice: the release of the mobile version of Microsoft Office was one; and Tiffany Alkouri, lead singer with LA pop rock band Fire Tiger was the other.
But first let’s bring the story of a week with no miles right up to date… We’ve been in NYC and New Jersey all week on holiday. The flag has been out and about, most notably at the Statue of Liberty, which was quite apt really because kids deserve to be free of cancer and able to grow up strong and well. Then there was the Brookyln Bridge and Time Square: the Parlour, an Irish bar up on 86th St next to Central Park where Jak, an exile from Glasgow, has pumped a fistful of dollars into LFN in the time that I’ve been on the road. But we’re still waiting to hook up: missed each other on Sunday. Then there was the beach down at Atlantic City where the sun sizzled up the high 80’s and the tan got a tanning.
But despite all the sightseeing and the razamatazz of the American dream, the most poignant event of the week happened on Tuesday at number one, East 53rd St. I’d parked the family in a coffee joint at the junction of 51st and Madison (for no reason other than it had WiFi, a teenage necessity these days it seems). Then I walked two blocks round the corner and in off the street at East 53rd, took the elevator up to the 5th floor and wandered into the Manhattan home of Solving Kids Cancer. SKC is the US mirror image of the NCCA. Run by families for the families, they carry out exactly the same kind of fundraising and support work as their UK counterparts. And I just wanted to stop by and say hello: this is all part of the learning experience for me as an outsider. I was greeted most kindly by the staff, and in particular by Scott, the main man. As Scott told me his story of how it all began, I thought of Stephen and Leona and got an insight into what it was that made Leona make the brave decision to give up a successful career in software to become a neuroblastoma campaigner on behalf of others who’d been similarly affected. After a long chat which resulted in me fetching the family lest they thought I’d been taken by aliens, Scott sent me on my way with a book: the email diaries of Syd Birrell about the daily fight against neuroblastoma staged by his son James back in the early days of the 21st century.
A remarkable family from Canada, the Birrells morphed into a unit that packed every last ounce of energy into living today like there might be no tomorrow. And sadly, 26 months after heading out down that road, there wasn’t: wee James passed away. I pondered the first 50 pages on the beach yesterday, and already I have a better understanding of the physical and emotional trauma that families must experience when neuroblastoma strikes, not once but twice, for the second time is invariably fatal.
One of the things that drives me on, particularly when the fundraising isn’t going well, is to just keep trying to get the message out there. Neuroblastoma is as bad as it gets in kids’ cancer so every new person who I can touch is a person made aware: or so I kid myself (see what I did there?). But the more I get into it, the more I feel at home with the people who Taz Glad would call “my bubble”. So it was with a very glad heart that I picked up a news story this morning from Leona, who herself is in the States on neuroblastoma business, that Coronation Street is planning to run a story about a five year child who gets diagnosed with the disease. I haven’t watched Corrie since the days of Ena Sharples, Minnie Caldwell, Else Tanner and Len Fairclough, but I might well watch this. In terms of awareness in the UK, this is a game changer.
It’s pretty well documented how much I love Social Media and how I use it to get the message out there about kids with cancer. I know I don’t actually need to be doing any of this because my family isn’t affected but that cuts no ice with me. Because I’ve been blessed with the drive, motivation and energy to do this, the challenge knows no end.
That brings me to wee Princess Puddles, a rock concert that will blow the roof off the Ironworks in Inverness in a few hours time in support of her, and an upcoming LA band called Fire Tiger.
I’m not quite sure how this happened, so maybe Tiff will explain in due course, but I got a Twitter follow midweek from @FireTiger_Tiff, lead singer and the driving force behind the band. I’m always fascinated by random follows. How does someone in LA get to find out about an eccentric dude on a bike 10,000 miles away, let alone jump on the story? It’s why I love Social Media. Does she know that having been in YouTube and had a look at their stuff, that I love it? Does she know that when I press ‘Send’ on this story that her band will reach a whole new audience across the globe? Does she know that if there’s the remotest link to anything British in the band, JJ will surely plug their material in Adelaide? She will shortly.
For Fire Tiger, think Roxette. Think Duran Duran. Think Belinda Carlise out front. Think Spagna. Think big, hard driving early 80’s pop rock given a modern day facelift.
Think Kim Wilde. Think “Kids In America“. Definitely think “Kids In America“.
For if and when Gail and her family eventually board that plane to Michigan for Princess Puddles to receive the treatment she so desperately needs to become Tiff in twenty years time, I will sit back and wonder just how it came to be that this song, written and performed by Tiff Alkouri and the Fire Tiger band, came to land on my timeline two days before the Ironworks and A Song For Eileidh. It’s remarkable. But then this adventure has been that way pretty much since the start.