We can all agree that 2020 has not been the best year… bit of an understatement. Especially for a lot of our community, who have been largely stuck indoors, distanced from loved ones and, at times, separated from the Niemann-Pick community altogether. But, to look at the positives, this unprecedented year has inspired the NPUK team to put a lot of insight and energy into our plans for 2021 in the hope we can make it a one to remember!
During 2020 our campaigns were largely COVID-19 orientated as an immediate response to the pandemic and its subsequent impact. In particular, our Social Not Distant campaign was created to keep our community connected and ensure that everyone feels supported as we go through such a turbulent times. Although this was the right campaign for the moment, it meant that our new campaign focused on “Invisible Illnesses” had to be, for the majority, put on hold.
You may be aware in June 2020 we held an “Invisible Illnesses” AMD Focus Group, during which many members of the Niemann Pick community kindly shared their own experiences and offered feedback on the campaign plans thus far. The incredible response we had from our community in both this meeting and another during the Digital Annual Family Conference in September have served as solid base points upon which we can develop our campaign. Something we have been busy doing…albeit with the restrictions of life in 2020.
So, we feel 2021 will be the year for our new campaign and we are so excited to share our plans. Everyone has now experienced an “invisible illness” in some form due to the impact of the Coronavirus and we believe this may encourage the wider community to understand this campaign and get involved, promoting that for some in our community life with an “invisible illness” is not just confined to 2020. Our campaign is centred on “invisible illnesses”, and particularly within our community the impact of ASMD Niemann-Pick disease type B. However, all our community’s voices will be vital in the success of this campaign as everyone has felt “invisible” at one point, with their struggles unseen and unheard, so everyone will have something important to add and feedback to offer as our campaign comes to life.
The campaign will have various components including informative posters on the impact of an “invisible illness” for which James Keeble (aged 16, ASMD NP-B) has been lending his creative skills to with some thought-provoking graphics, originally developed as part of his A-Level coursework. James’ and other community members’ experience of living with an invisible illness will be absolutely vital to the campaign.
One idea which we are currently working on to bolster this promotion as we wait for restrictions to lift is the use of audio narrative, as the recording of people’s stories and experiences can be done from the comfort of one’s own home, and can then be put to music, graphics, and video We also hope to work on a short film focused upon the experiences of living with “invisible illnesses”. We had various ideas for this film, which were discussed during the focus group and during our session at the 2020 Annual Family Conference and Interactive Workshop, and we are currently sketching out the plans for this. Of course, our plans have had to be edited and re-sketched due to the ongoing restrictions and social distancing, but, after the success of “Go Make Memories”, we are sure we can create a film that represents the experiences of our community.
So, there we have it, it is time to get excited for 2021 as Niemann Pick has lots of big plans in store for our community. Stay tuned for the next blog post, for even more New Year’s Revelations!
