It has been too long since the last blog… and there is so much to catch up on. We have had several screenings of A Life Worth Living, and have now finalised the DVD copy for release, once the film festival season completes.
One thing which I don’t do well is waiting. Perhaps this is because Duchenne makes you painfully aware of how precious time can be, and how important it is to use it well. So yes, I am as eager as many of you to see the DVD on full release and available across the globe.
The Duchenner's at the Hove screening
In reality, I must keep reminding myself that for a project like this, with ambitions to raise international awareness of Duchenne, this cannot be achieved quickly. We have already started to build a following from many within the MD community who have attended one of several private, prerelease screenings. But if we are to reach a bigger audience, we must find some way of reeling them in. One potential route is through festival awards or nominations, which require us to hold off from a global release just yet.
So far, the pre-release screenings have been fantastically received. People have been pleased to see that we haven’t shied away from any issue, and tried to create a complex and multi-layered film about Duchenne. There have been laughs and tears in equal measure, and I have been truly touched by the many private messages I received subsequently.
In May, I hosted a private screening in Hove, very close to my home town for faamily and friends. We were extremely glad to welcome three of the cast members – Mark Chapman, Mahesh Malhotra and John Linde, who made great efforts to be with us. Despite a few sound glitches, the event went well and the film was very well received.
We also held a screening in the Houses of Parliament, organised by the Muscular Dystrophy Campaign on the behalf of the All-Party Parliamentary Groups for Muscular Dystrophy and for young disabled people. The audience was prestigious, including two MPs and two Baronesses, all there to see my film. This was a fanastic evening, and I was humbled hearing the Baronesses, two very well respected figures in the world of disability politics, praise the film. There were also many supporters and families involved with the MDC who I was very pleased had a chance to view the film.
There have also been a number of other private screenings – one hosted by Mark Chapman at the Scottish Parliament, one by John Linde in the Netherlands, and screenings across the country at MDC Trailblazer meetings. The film is already spreading a positive message about disability and offering hope and inspiration for families and young people with Duchenne. This makes me all the more aware of the need to push on and take this global.
Over the next few months there will be a number of film festivals to enter, large and small. I will keep you posted on our progress. For any of you desperate to see the film before the full release , there will be another few private screenings – one at the Muscular Dystrophy Campaign annual conference in Nottingham in October, and one at the Action Duchenne annual Conference in London in November. It would be great to see you there!