By Action Duchenne trustee Jon Hastie
This week saw the completion of the final cut of my road-trip movie, A Life Worth Living: Pushing The Limits Of Duchenne. After a series of pre-screenings with sponsors and close friends, where we received some great feedback about the film, director Annie and editor Rinku have worked hard to bring it all together. You can see the 2 minute trailer here:
The film is now looking great – and we’re now finalizing the DVD with subtitles, artwork, etc. to create a professional product which we can sell to raise money for research and support for adults living with Duchenne. We anticipate the DVD to be available from our website in late April.
Next up, we will be entering film festivals to further raise awareness of the project and Duchenne in general. This film aims to inspire a new generation of people with Duchenne to show what is possible. But it is also for the rest of the world, and just how valuable life is and the remarkable feats that can be achieved by disabled people with the right support and opportunities.
For me, the making of a life worth living has been life changing. At the beginning of the movie I say that I want to inspire a new generation of Duchenners to push the limits of what they can achieve. Little did I realise how much the journey and the people I met would inspire me as well. Back in August 2010, when it all started, I had already achieved two big life goals – getting a Ph.D., and securing paid employment. But I was still depending on my parents for care and support. It was not until I met the stars of the film that I found the inspiration and strength to push for Independent living. Now I’m in my own flat, and I’m loving my new found freedom. I truly hope that other people can get from this film even just a small measure of the inspiration that producing it has given me.
A Life Worth Living is no ordinary road movie. It’s a fun, inspiring, poignant and surprising rock ’n roll journey that takes us into the lives of guys who, against all the odds, show us just how valuable life is.
You can keep track of the project at www.alifeworthlivingfilm.com






