Super Jon

Published on 21. Apr, 2012 by in Charity, Family, Jon, Muscular Dystrophy

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Not a long post this one today, but just a few words to once again celebrate how lucky I am to have such an inspirational brother!

If somehow you’ve missed it, my little brother has recently been making himself somewhat of a media superstar.

As most of you know, over the last year, Jon and a team of fantastically talented and generous film makers have been working on his documentary film “A Life Worth Living“. For any first time readers (I think this might be flattering myself to believe that such people exist), ALWL is a film about Jon’s road trip around the UK and continental Europe, meeting other adults living with Duchenne Muscular Dystrophy leading inspiring lives.

The great news is that the project has been a great success. Whilst we are continuing to work to raise the funds that the project needs for the distribution of the film, and taking the production through the final phases, I have now seen the final version of the film and it is a great piece of work.  With the first invitation-only screening of the final documentary due next month, and another screening in the Houses of Parliament in July it is almost ready for public viewing. A short 6 minute version taken from the film is below.

Unfortunately, the key word in the above paragraph is “almost”. Because of the constraints of the film festivals that Jon and the team are entering the documentary into, we are not permitted to hold a general-admission film premiere in advance, or even sell any DVDs, until the festivals are complete.  The good news is that if you can just wait, you can pre-order DVD’s from the site.

Fortunately Jon has not let these hurdles stop him from spreading the word about DMD and raising the profile. In the last month, Jon has been on both Channel 4 news at 7pm (see video below)  and Embarrassing Bodies. For the charities that have supported the project and that support sufferers and families of this condition (the Muscular Dystrophy Campaign and Action Duchenne) this has been fantastic exposure.


And for Jon there has been some excellent feedback too. Everyone I have spoken to who has seen the clips has said what an inspirational person Jon is, and what an incredible achievement the film is. I couldn’t agree more, and I am very proud to have someone making such a difference in so many people’s lives as my brother. Indeed, weekends like this one, where a chest infection has meant that Jon has had to cancel a trip to the Netherlands for a screening and a talk at a company that has supported the project, come as a stark reminder of how restricting Jon’s condition really is, given how much he normally achieves.

The superstardom won’t stop here I’m sure. On the back of his recent media appearances he has been invited by Airbus to give a motivational talk to their managers in Toulouse: a gig usually reserved for some very high profile speakers. I really hope this is the start of many more exciting things to come that ultimately raise the profile of Muscular Dystrophy and ultimately help to raise funds for a very worth cause, improving many people’s lives in the future.

 

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