“You better stop dreaming of the quiet life, it’s the one you’ll never know” (The Jam)
It feels appropriate to remind people of what we’re planning and why.
What?
Over 6 days this Summer, Rod and I will ride a Tandem bike from Røros in Norway 500 miles north to the Arctic Circle Centre.
Why Røros?
Apart from being a UNESCO World Heritage Site it’s also the location for the first reported cases of a condition called Batten Disease. A variant known as Juvenile Batten Disease affected 4 siblings in the town.
Why is that important?
Another variant, Late Infantile, affects my own children, Ellie Mae & Caleb.
There are approximately 100-150 children in the UK suffering from the different variants of Batten Disease which cause blindness; epilepsy, jerks of limbs, loss of speech and swallowing skills, loss of mobility. Death is inevitable and may occur anywhere between early childhood and young adulthood.
Why a Tandem? Ask Rod.
Why the Arctic Circle? Ask Rod.
So July will see us set off to the Bear Stronghold of Europe to raise awareness and funds for the BDFA, who support children & families affected by the disease
To demonstrate stupid ideas and poor planning aren’t particular to this trip I thought I’d share the blog from another ride Rod planned. Continue reading →