Hi everyone

Just to let you know the fundraising is still ongoing, the skydive was fabulous, VERY scarey but fabulous. the group of 8 raised over £6,000. You can still donate http://www.actionduchenne.org/stopwasting/pauline/event/37/skydive-from-10000-feet and there are…Read More

Skydive accident eek!

5 out of 8 of us jumped, myself and 2 others had to postpone due to poor weather and delays. Professor Steve Wilton, only the guy who created the genetic patch which may save my son, he jumped and landed badly. Shattered his ankle and broke his leg, now…Read More

Its THIS Sunday, eeeekkkk... please read on

These 2 boys were diagnosed with Duchenne just weeks apart. 2 babies every week in the uk born with this devastating condition. Josh is my son, on the left, he is now 10 and without treatment probably will not reach 20. We are so close to the first real…Read More

Just take a moment to think

Life is too short, so please,grab a coffee, sit and have a few thoughts on what that REALLY means. This condition creeps upon its victims with no warning. No amount of pre-pregnancy screening would have predicted this, this could be you, your sister, your…Read More

Not long until the skydive

Thank you for supporting the cause, as you probably know, my 10 year old son Josh has Duchenne. Up until the age of 5 we believed we had a healthy "normal" boy, a simple blood test revealed he has this hidden and devastating condition. Duchenne can and does…Read More

5 weeks to go

Jumping from a perfectly good plane, what was I thinking?? BUT if it helps us find new treatments it will be worth it. Getting research ideas through trials to become real treatments, Duchenne seems to be a forgotten condition when it comes to funding. Yet…Read More
to comment