This film has been made possible by the dogged determination of Douglas Sager, soon-to-be Trustee, to raise the funds and get Awareness into the limelight.
Many thanks to all who donated over the last year, and especially to Dorset Orthopaedic Ltd for their invaluable support for this project – visit www.dorset-ortho.com for find about their services for people with CMT.
To make a donation to Charcot-Marie-Tooth UK to further our work like this for people affected by CMT, please click on the Donate button on this page.
We were fortunate enough to gain the support of Catherine West MP for this film and she and Douglas Sager worked tirelessly to organise the world “Premiere” of this film at the Houses of Parliament on 13th September. Other speakers included Professor Mary Reilly, from the MRC Centre for Neuromuscular Disease in London, trustee Karin Rodgers together with Sophie Arnold, who run our Youth Events, and member Donna DeWick.
Watch the video of the event here:
I first became involved with the Charcot-Marie-Tooth UK awareness film when Douglas Sager from the charity had made contact with the National Film and TV School, asking for the availability of a filmmaker. The brief centred around the perception of how a CMT affected walk might look like to members of the public unaware of the disease. I felt the film could have more visual possibility and be more immediately engaging if we ignored subjective feelings, and we took a look at the actual nerves beneath the human body. What if we showed nerves as light energy, in a world underneath the human world, a kind of X-ray vision that only displays nerves? What if we created that world in order to illustrate the nerve damage caused by CMT? What if we could see the different stages of CMT in four different people, in different age groups?
With the charity’s blessing, I asked film concept artist, Will Houghton-Connell, to design a nerve body.
There had been earlier discussion of showing the chronology of someone beginning their life with CMT, and eventually worsening to leave them wheelchair bound. We would see the key stages of nerve degeneration in this one person as they got older in life. This would mean casting four people of different ages, who all could credibly appear to be the same person. However, CMT affects all people in different ways and does not have a linear start and finish for every person. Some people only live with a mild form of CMT all of their lives, while it can worsen for others when they are young. Because of this, it was decided to have a sample of 4 different types of people, who would not be confused as being the same person. Professor Mary Reilly of Queen’s Square advised us on devising the four stages of nerve damage.
The one condition I gave myself, was to only film real people with CMT when representing people with CMT in the nerve world. This is something I successfully followed through on, and for me remains the biggest triumph of the film. No actors were used in this, and the dedication to raising awareness for CMT has really inspired me throughout this project. Lisa and Harvey Rogers, Doug Sager and Emma Lines as well as Meg Duff, Adele Dillon and Jane Bevan, who appeared later in the film, were all exceptionally passionate about giving awareness to CMT.
For the nerve design, we looked at reference material of nerve bodies – everything from Bodyworld to science material as there is no standard nerve skeleton – every available depiction is different- we had to make one that looked good on film, and was reasonably medically correct. Nerves tend to be so thin, that on a wide shot, necessary to tell our story, you might never see them!
For the “nerve world”, I decided initially to film people in black body socks covered in EL lights, which are tiny wires of neon light. By filming these against black backgrounds we could then create the illusion of people made of nerves, and cause them to electrically flicker in order to show degeneration. I was then convinced by visual effects supervisor Adam Arnot, to do it all digitally, with computer generated imagery.
I brought in award winning cinematographer Nick Cooke to photograph the production. Nick is one of the best cinematographers working in the UK. We filmed on the Alexa camera with a 150-600mm zoom lens, which has a shallow depth of field that would draw audience attention to the people with CMT, and give great clarity and graceful movement to compliment the visual effects. We also decided to film in a park in winter, as the trees subconsciously look like human nerves when we applied a film negative effect to the image, giving a nice poetic look to the “nerve world” backgrounds.
The finished film was greatly enhanced by the analogue and digital sounds of sound designer Peter Warnock and composer Marko Hautamaki, as well as Duncan Casey’s clear voiceover.
The film was incredibly well received at Parliament in the presence of Catherine West MP and Professor Mary Reilly on the 13 September 2016.
I’d like to thank Linda McDonald Cairns and Ajay Chowdhury for production support, Professor Reilly for her generosity and support in advising us on internal nerve damage and of course Douglas Sager and Karen Butcher from Charcot-Marie-Tooth UK.