Hello! And thanks for visiting this page.
I'm guessing you came by here because you know of the amazing efforts of Mr Steve Ogden, aka Pedally Steve who is currently lathe-cycling ( I just made that term, up ha ha ! ) without gears, and virtually, from Land's End to John O' Groats.
He is very generously asking his donors to consider making a donation to the Lowe Syndrome Association because of his loyal friendship to our family and our son, Jonathan, aka Joff, who has Lowe Syndrome.
Lowe Syndrome is an ultra rare, complex, life limiting and life threatening genetic condition that affects boys only and broadly speaking, concerns the eyes, the brain and the kidneys.
Joff will be 17 in August. He is registered blind, has epilepsy, is doubly incontinent, is non-verbal, has a kidney dysfunction called Fanconi syndrome, and has profound and multiple learning disabilities, amongst other problems. As far as we know, Joff is only one of three males in Scotland living with Lowe so the support of the Lowe Syndrome Association has been literally livesaving for Jonathan and crucial to his doctors and therapists here.
Despite his difficulties he is a braw wee laddie, and through him, our family has met many truly amazing people - including the inspiring Pedally Steve.
If you would like to support the wonderful work of the Lowe Syndrome Association you have come to the right place! They foster friendship, support and information, encouraging essential medical research all over the world for families living with this complex disorder.
As with the UK sister site Just Giving, you make your donation by credit card. However, as the Lowe Syndrome Assocation is a US charity, your donation will be made here in dollars and converted by your credit card company to sterling on your statement.
For instance, if you donated $8 it would cost you just under £5 sterling. If you donated $16 it would cost you just under £10. Using today's exchange rate of £1 = $1.64 ( 3rd August 2011) You get the idea, I'm sure.
On behalf of the Lowe Syndrome Association and our son Joff, I thank you for reading and hope you can support us.
...care today, cure tomorrow....
Slogan of the Lowe Syndrome Association