TIMOTHY SYNDROME ALLIANCE

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Timothy Syndrome is a rare, life-limiting genetic disorder which is in desperate need of research and  increased awareness among medical practitioners. Because the condition is so rare, or rarely diagnosed, parents of children affected by this condition have had to do much of the research on their own, or by sharing information with each other on social media.

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In 2019 Nick and Sophie Muir established a new UK charity called Timothy Syndrome Alliance, with the aim of bringing families and professionals together for support and the pursuit of knowledge.

 

This film was produced soon after the charity's launch and their first family day in Cardiff, to raise awareness of the condition and to offer families a place to share their stories.

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SOLUTION

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The film we produced took us on the journey of Sophie and Nick with their son Calvin who, when younger, presented many varied symptoms without a clear diagnosis. Old family films of Calvin were coupled with new footage of him doodling and narrating sections, and an effort was made to take the viewer on the same journey as his own family. A journey that began with confusion, loneliness and self dependence and led to discovery, diagnosis, friendship and hope. This was reinforced by the mothers I interviewed as they attended the family day conference in Cardiff. Whilst their children were all different, their journeys had been similar and their need for community was clear.

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We made every effort to give accurate clinical terms where appropriate without making the film purely about the science of Timothy Syndrome. The 'call-to-action' at the end invites parents and clinical professionals to come together under the umbrella of the charity to pool their knowledge and offer greater support.

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RESULT

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The film had an instant impact and was viewed and shared many times upon release. Requests were made to translate the closed captions into different languages to extend the reach. The film won an award at the Rare Film Festival in London, and and got bronze in the prestigious PM society digital awards. It was also shown on The Disorder Channel on Roku and Amazon Fire TV after reaching the final stages of the Disorder festival in New York.

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Here is what the Chair of the charity had to say:

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"Rob was flexible and easy to work with. He was not always visible – for most of the Cardiff day it did not feel like we were being filmed as he blended in - so we did not feel any pressure. With the one-to-one interviews Rob was patient, only giving direction when needed, giving us a chance to speak. He was also fabulous with the children who were very curious about the man with the camera. He has a great eye for continuity, and allowed shoots to happen over a period of time to avoid them being too intense.
Overall Rob was very professional. The work is outstanding – he has managed to create a beautiful explanation of a not-so-beautiful diagnosis."

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Sophie Muir  |  Chair

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SOCIAL MEDIA RESPONSES

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• ’Really moving, human stories beautifully told’

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• 'Amazing. Emotional, thoughtful, and educational'

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• ’So wonderfully done and very moving.... it really shows how rare this genetic
  syndrome is and helps people understand what a journey you are all on to find out more'

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• ’Amazing! Very real and very emotional. Brave kids and brave parents that all deserve more answers'

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• ’As the tears trickle down my face can I say what stars you all are in bringing awareness to this condition. It goes without saying that Calvin is the biggest star of the video and I hope that you can get as many on board in order to help with more research and have a better understanding. It’s just wonderful that you have all come together and don’t feel like you're the only ones fighting alone. Well done Nick, Sophie and Rob and all the courageous children and their parents who have put this together. I applaud you’

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