We’re celebrating ten years of John Lee Taggart at Niemann-Pick UK.
John joined the team in a more junior communications role and has grown into the Head of Communications we know today. Along the way he’s led films, campaigns, animations, publications and international projects — always with the same quiet focus on helping families feel seen and making Niemann-Pick diseases better understood.
We asked him a few questions about the last decade and here are his answers, word for word...
What is your proudest moment over the last ten years?
It is difficult to choose just one moment, because the last ten years have included so many projects, campaigns, events and personal connections that have meant a great deal to me. But I am particularly proud of the films and creative projects we have produced to help people understand Niemann-Pick diseases in a more accessible and human way. Being able to take something incredibly complex, which has such a negative perception, and turning it into a story that helps families feel seen in a positive way, and/or helps the wider public understand, is always a source of great pride. I don’t take this trust for granted, it is such a privilege.
This past year or so we have really pushed things to a new level (with the development of Never Heard of It) by creating a multi-faceted project both with and for our community members, which provides both tangible experience on-set, and feeds into our broader awareness work. It is a lot of worlds colliding that can only mean an even further upward trajectory for the very special small charity that is NPUK!
More broadly though, I am proud that I have been able to grow alongside the charity and remain part of the community for ten years. I don’t mean to be dismissive but the relationships I have built with friends, families, colleagues, and international advocates, means more to me than any single campaign or achievement!
How has the charity progressed from when you started?
When I first joined Niemann-Pick UK, the charity was already deeply committed to supporting families after years of dedicated advocacy and support, but I think it’s fair to say that the communications side (digital presence, and public-facing work), were much smaller in scale.
Over the past ten years, despite NPUK’s size, we have become more visible, more connected, and increasingly ambitious. We have developed stronger relationships with researchers, clinicians, pharmaceutical companies, patient organisations and partners across the world. Our resources, campaigns, events, and online communications now reach a much wider audience, while still retaining the personal and family-led approach that makes NPUK special. That’s definitely something that is important to me.
The charity has also become more confident in telling its own story and the stories of the people it supports. We are now creating films, animations, campaigns and educational resources that can reach people far beyond the immediate Niemann-Pick community, but despite this progress, the charity has never lost the sense that families come first.
Has your role changed since the first year, and if so, how?
My role has changed enormously.
I originally joined in a much more junior communications capacity…I think I was the Social Media & Communications Officer? Not 100% on that, but in short I supported the charity’s social media, website, publications, and general awareness work. But over time, the role developed as the charity grew and as we recognised the importance of communications not simply as a way of sharing news, but as a central part of advocacy, education, fundraising, and community engagement.
Technically speaking I am “part-time” here with NPUK as I have responsibility across The International Niemann-Pick Disease Alliance and The International Niemann-Pick Disease Registry, as well as feeding into the work of the UK LSD Collaborative and The Newborn Screening Collaborative. My work includes communications strategy, campaigns, partnerships, publications, media work, supporting international projects, and of course filmmaking.
So yes, the scale has changed considerably, but the purpose remains the same for me: helping families access clear information, feel connected and ensure that Niemann-Pick diseases are better understood.
What would you like to see for NPUK in the next ten years?
First things first I would like to see continued progress in treatments, research and diagnosis, so that families have more options, better outcomes and greater hope.
But for NPUK, I would like us to remain a trusted, compassionate and genuinely family-centred organisation, while continuing to grow our reach and influence. I hope we can strengthen our support services, develop more accessible resources and make sure that every newly diagnosed family can find us quickly and understand that they are not alone.
I would also like to see the charity continue to embrace creativity, as they increasingly have across my tenure (huge shout out to the very trusting Trustees!) After all, film, animation, storytelling and digital media give us the opportunity to reach audiences who may never engage with a traditional medical or scientific resource…we now have quite a catalogue that proves this.
Ultimately, I would like NPUK to remain recognisably itself: personal, determined, occasionally unconventional and always willing to fight for the community it represents. Who’s with me?
Any further comments about the charity and community?
The Niemann-Pick community is unlike any other community I have been part of. It is made up of people facing extraordinarily difficult circumstances, yet it is also filled with humour, generosity, resilience and a willingness to support others. Over the last ten years, families have trusted me with their experiences, photographs, memories and stories. That is something I never take lightly. There are many people who are no longer with us who have had a lasting impact on me and on the charity, and they remain at the heart of everything we do…those who know, know.
I feel very fortunate to have spent ten years with NPUK. It has shaped me professionally, creatively and personally. I am grateful to the families, staff, trustees, volunteers and other partners who have supported me, challenged me, and allowed me to be part of their lives.
Ten years has passed remarkably quickly, and although there is still a great deal of work to do…I am extremely proud of how far we have come. Thank you all!
Thank you, John — for the stories, the creativity, and for always putting families at the centre. Here’s to the next ten years!