We are pleased to start this week with another positive update surrounding our upcoming animated short film, “Invisible Manners”, which is being developed in a collaboration between Niemann-Pick UK, INPDA International Niemann-Pick Disease Alliance, and rare disease community members to raise awareness of invisible conditions.
Here you can see a few glimpses of what the film may look like in these latest concept pieces by artist and animator Lingxi Zhang. There will be somewhat of an experimental style, to both set it apart from other productions but also to better illustrate the thoughts, experiences, and challenges that are presented…mixing animation and real footage in a diary/scrapbook style. Here you can see the following scenes/themes:
1) The character sits under a tree writing in his/her diary scrapbook. Quiet and unassuming, others in the park are paying little to no attention – this is the introduction before the “journey” begins. We chose to give the character a hoodie for two reasons; to symbolise hiding/isolation, but also due to the fact a common symptom of ASMD NPB is a swollen abdomen, something which our community reported can easily be hidden by baggy clothes.
2) This scene displays the overwhelming nature of certain physical exertions which may be a lot easier for those not affected by an invisible condition – we regularly heard stories in our focus groups surrounding this topic, both from personal points of view and also reporting how others respond to it e.g. negative assumptions of people taking the elevator over walking up the stairs.
3) Again this was a very regular comment from the feedback we received: the general public’s considerations of what a Blue Badge holder looks like…so we consider it a central scene in the film. Thanks to the experimental scrapbook style we are able to have an insight into the negative feeling one has when people are making incorrect judgements with no consideration for a person’s personal challenges or potential condition(s), invisible or not.
4) “Appointments, meetings, pills, and probes…” here we are given an Alice in Wonderland inspired look into the all-consuming nature of conditions like ASMD NPB, NPC, and the associated must-dos that accompany them. This is a rough draft, of course, but we are hoping to better tailor this to the patient experience with the help of you, our community!
Well that’s all for now, we look forward to updating you again as we go. Thanks for the support everyone, we are pleased with how it’s going so far and are still on track for that mid November release, fingers crossed.