WELCOME TO
THE
CONGENITAL MYOTONIC DYSTROPHY RIDE OF HOPE

this web site is to inform people about what we do and what we are about.
Our beautiful little boy, Josh , was born with a condition called congenital myotonic dystrophy. We are his adoptive parents after meeting him as a baby on the ward on which I worked at the time.
Josh has done very well so far despite his many difficulties . Congenital myotonic dystrophy is a life limiting progressive neurodegenerative condition for which there is no treatment and no cure. It is a rare condition that is not well known. Our aim is to change that so that we can gain and spread knowledge and empower families to seek the best care for their kids.  To that end , we hope to raise some money to support an organisation called PAKs.. Positive Aids for Kids. This organisation aims to provide funding to families for those little extras that can make our kids lives a little easier e.g specialist splints, footwear, or even just a simple thing like a special day out. 
Our Ride of Hope is now coming up to its 7th year [2024] . We welcome and encourage motorcyles, trikes, scooters to ride with us as we make our way up the country from Lands End to Fort William up in the highlands of Scotland. 
We ride in support of Josh and his fellow warriors , some of whom have lost their battle to this devastating condition and who the various days are named after. We ride over a week stopping at various biker cafes en route. Please visit our facebook page 
"congenital myotonic dystrophy ride of hope" .