Be a Voice for Change
The Support Our Campaigns page is your gateway to joining Niemann-Pick UK’s mission to transform lives affected by Niemann-Pick diseases through advocacy and awareness. Our campaigns, such as advocating for Niemann-Pick inclusion in the UK’s newborn screening programme and initiatives like A Rare Find (2023), focus on securing early diagnosis, improving treatment access, and enhancing family support. By getting involved, you can amplify our voice, share compelling stories, and influence policymakers to prioritise these rare conditions.
You can contribute by signing up to our campaigns, sharing your experiences to highlight the impact of Niemann-Pick diseases, or donating to fund critical research and advocacy efforts. Every step matters, from collaborating with the UK LSD Collaborative to spreading awareness on social media. Together, we can drive impactful change, ensuring better outcomes for those living with Niemann-Pick diseases and their families.
Ebony Samuda talks candidly about her own experience(s) of parenting, disability, superstitions, and the stigma that is attached to these subjects from both a British and Caribbean perspective. Narrated by Francis Lovehall (A Thousand Blows, Small Axe) with an original score by Anil Tumkaya, it’s both an entertaining and eye-opening account of the day-to-day of a parent with a child affected by Niemann-Pick disease type C.
We really enjoyed spending this time with Ebony and Amarii this year, to learn more about their personal story, the barriers and challenges they face, and the ways in which they cope with this adversity. We are beyond proud to have them as part of our community, and look forward to sharing more footage from the shoot across 2025, we have so many gems that just didn’t make the final cut!
The Invisible Interviews Series, produced by Niemann-Pick UK, is a poignant documentary film collection launched in 2022, showcasing the personal stories of individuals and families affected by Niemann-Pick diseases. This series builds on the success of our earlier campaign, Invisible Manners, and features heartfelt interviews, such as Graham Kirk’s story, which was shortlisted at the 2024 Smiley Charity Film Awards. By sharing authentic experiences, the series aims to raise awareness about the challenges of living with this ultra-rare, life-limiting condition, foster understanding, and strengthen our community’s voice. Each episode highlights resilience, connection, and the urgent need for research and support, encouraging viewers to engage with our mission to improve lives impacted by Niemann-Pick diseases.
A Rare Find is a comedy short film with a difference…as it hopes to raise awareness and start conversation surrounding newborn screening, the blood spot/heel prick test*, and the desperate need for positive progress within the current UK newborn screening programme (which at present, screens for only 9 conditions, for context the USA screen for up to 59!) Life with a newborn is hard enough, as our struggling young parents (Jack Robertson & Chantelle Taggart) find, but the challenges of a long “diagnostic odyssey” can make this even harder. Early screening can be a huge positive step to find out if a rare condition is present, as early intervention and therapy is absolutely key. We need YOUR help to raise our voices and make sure the UK government sees the massive benefit of adding more conditions to the UK newborn screening programme – “test early, to treat early – let’s help families thrive!”
Learn more about the film at the Rare Revolution Magazine’s website, here: https://rarerevolutionmagazine.com/a-… This film was made possible thanks to the support of 14 small rare disease charities from The Newborn Screening Collaborative (a UK LSD Collaborative led initiative), including; AGSD – UK, ArchAngel MLD Trust, Batten Disease Family Association, Cure and Action for Tay-Sachs – CATS Foundation, Children’s Heart Federation, Fragile X Society, UK, The Gauchers Association, Max Appeal, MLD Support UK, MPS Society UK, Muscular Dystrophy UK, Niemann-Pick UK, Pompe Support Network & Spinal Muscular Atrophy UK.
Invisible Manners is an animated short film on “invisible conditions” and the experiences of those affected – it features the voices of Billy Boyd (The Lord of the Rings, The Hobbit: The Battle of the Five Armies, Outlander), Isy Suttie (Peep Show, Man Down, Damned), Weruche Opia (I May Destroy You, Bad Education, Sliced), & members and friends of the NPUK/INPDA community.
This project was developed closely with our community in order to illustrate the many emotions and challenges an individual with an invisible condition can face on a daily basis. By using a mixture of animation, photography, and narrated lines read by stars from both outside and inside of our community, we hope we have developed something which can raise awareness of both Niemann-Pick diseases and invisible conditions more broadly…as “not all that you can see, is everything that is there”…and there are far more similarities than differences when it comes to the lived experiences of those affected by rare, genetic and/or invisible conditions.
“Go Make Memories”, is a short film which hopes to raise awareness of the ultra-rare and devastating group of genetic conditions, Niemann-Pick diseases (NPD). The experiences of the individuals and families affected by NPD takes centre stage in this production, which has been developed by Director/Producer Carl Mason and NPUK Communications & Campaigns Manager John Lee Taggart, in direct collaboration with the lovely individuals and families our charity, NPUK, represents. By using a mixture of live action and animation the film explores the impact this rare condition has on those affected by it, by following the deterioration of the child and the subsequent emotional turmoil that comes hand in hand with such a diagnosis…especially when this is followed up with the suggestion by the family’s doctor to simply, “Go Make Memories”…
The short film has attracted a number of awards, including; Best Picture & Best Charity Film at the Rare Film Festival (RDUK) 2020, Best Short Award at Sällsynta Stories 2020 (Stockholm), 1st Prize 22-30 yrs at Chiyoko International Youth Animation Festival 2019, Best Experimental at Feel the Reel International Film Festival 2019, and more.