We have lift off
Apologies for getting this blog up on the site so late, things have been a little bit hectic since we landed back from our holiday in Crete. I did actually write a blog on the last day of the holiday but it didn't make it back on the Easyjet flight to sunny England! (this time it wasn't Easyjets fault)
On the last day of the holiday as the sun went down behind the mountain I wandered to the back of the beach to a small bar to just have a think as to what lay ahead when we landed back in the UK. It was evident watching people order a beer or small glass of wine that the feeling of content may have left our lives forever. I don't know how we do it but to live every minute of every day knowing what is in store for our little boy is challenging to say the least.
I insisted that the website went live before we set off on holiday and with a concerted effort and some long hours we did it and established a great focal point for the charity. I also knew that by doing this we would encounter a frenzy of activity on our return. I wasn't wrong!
In the space of two weeks we have filmed Sky's "Superleagues Supermen", Granada Reports and headed to Manchester's Media city on a few occasions to speak on GMR & 5 live radio. (As you have probably seen this is about as far out of my comfort zone as I could possibly be, but it has to be done) The rugby world has got behind our family and from the bottom of our hearts I thank you for your efforts and kind words. The "JJ salute" is fantastic and to see the lads pulling these out the bag at Magic weekend shows the power of the people behind this charity. I don' like to single people out because players from all Superleagues teams had a real go and brought a smile to all our faces over the two days at the Etihad. KEEP IT UP!
The twitter and facebook campaigns have been gaining momentum spurred on by a dedicated team of tweeters led by our ambassador and friend Lucy Jo Hudson and husband Alan Halsall. Alan swore he'd never go on twitter but now like me faces a stint in twitter rehab. The power of these guys is incredible. I'm surround by a team of people who are dedicated to making a difference, their efforts to get the charity off the ground have been incredible.
Together I am sure we can raise funds and awareness for Duchenne Muscular Dystrophy but we must allocate it to the right people that have the potential to save lives. I won't rant on about the projects that we are interested in like Exon skipping, AAV vectors and the up-regulation of Utrophin but I think our chosen paths will become clearer over the next six to twelve months.
I have been asked on many occasions how much do you need and will that solve the problem? The answer is that we want to fund as many trials or research projects into Duchenne muscular Dystrophy as possible by listening to the advice of leading researchers around the world.
It has become evident that this charity is about more than just raising money. Speaking to researchers, lobbying parliament, dealing with the media and demanding help and funds from the government are all on the agenda. But with the calibre of people who sat round the table last week I truely believe we will change the progressive nature of this condition and give Jack the long and enjoyable life he deserves.
I have to admit since getting Jacks diagnosis I hear peoples pain a lot clearer than I did before. When I hear a tragic story now on the news or somebody tells me of their own misfortune I can actually feel their heartache. I also know how easy it is to leave charity work to other people not because we are bad people but we all live in this busy crazy world with our own families to feed. I urge you to sit for five minutes and try an allocate one hour or one day to helping us raise funds to beat this nightmare condition.
Love you all