Take On a Challenge

I joined NPUK back in 2003 after our beautiful daughter Lucy, then just five weeks old, was diagnosed with Niemann-Pick disease type C (NPC). Along with my family, I received amazing support from NPUK during that difficult time and in the following years when Lucy’s brother and sister, Hannah and Samuel, were diagnosed and passed away from the same condition. I can therefore bring a true understanding of the challenges faced by patients and families to my role as CEO, and my personal experiences are my inspiration to try to make a difference, and to bring hope, to others affected by Niemann-Pick diseases.

Email: toni@npuk.org
Phone: 07816 398 591

I help define the charity’s content writing, social media strategy, as well as designing and producing both our printed publications and any other visual media. I have a particular interest in storytelling and filmmaking, believing that it is without doubt the best way for us to empower our community, raise awareness, and increase broader understanding and interest around Niemann-Pick diseases and other rare conditions.

As part of my work I wrote and directed the animated short Invisible Manners (2021) which starred Billy Boyd, Isy Suttie and Weruche Opia and was an official selection at the BIFA qualifying North East International Film Festival 2022 and received an “Honourable Mention” at the Montreal International Animation Film Festival 2022. This was also accompanied by Invisible Interviews (2022), a documentary film series featuring four of our community members with narration from Sheila Reid. I also helped create the Newborn Screening Collaborative’s A Rare Find (2023) which was narrated by Robert Webb and went on to win GOLD at the Smiley Charity Film Awards 2024, and more recently “Hadid and I” an independent concept short about LSDs which won the “Audience Choice Award” at BIFA qualifying Sunderland Shorts Film Festival 2025.

Outside of filming I’ve also been lucky enough to lead on a number of other projects over the almost ten years I’ve worked in this space; including (but absolutely not limited to!) the redevelopment and further promotion of the INPDA’s Think Again. Think NPC. campaign, the Dementia Strikes Children Too awareness drive, appeal work for BBC Children in Need, and most recently this newly updated website and the associated ASMD Perspective Index tool! It feels incredible to part of a group who are completely devoted to helping those affected by Niemann-Pick diseases. I am hoping through my work we can reach a far wider audience so that more people are conscious of these conditions.

If you have any ideas on how to raise further awareness please reach out, I’d love to chat!

Email: john@npuk.org
Phone: 07984 366 334

I joined the NPUK team as Families Officer in January 2020, however I’d previously held the role of NPUK Project Team Leader for four years, overseeing our National Lottery Community Fund project, “Shaping Our Future Together”. My previous work experience has involved providing support, information and guidance to individuals, so feel I perfectly placed and excited to continue in this role. As a Families Officer my role is to offer practical and emotional support to those affected by Niemann-Pick diseases and their families and friends – please do get in touch if there’s anything I can help with!

Phone: 0742 310 6595
Email: louise@npuk.org

As Clinical Lead for Patient and Stakeholder Engagement, my focus is on strengthening communication across the Niemann Pick community. I work to create clear, accessible ways for families and professionals to share their experiences, through advisory groups, consultations, surveys, and individual conversations, so their insights directly guide our work.

I collaborate closely with healthcare teams, patient organisations, academics, and industry partners to advance advocacy, improve services, and support meaningful clinical progress. A key part of my role is developing trusted, practical resources on care pathways, clinical developments, research opportunities, and tools tailored to the needs of the Niemann Pick community.

By working alongside clinical experts and industry and research partners, I help promote research, best practice, and wider awareness. My aim is to improve understanding, encourage earlier diagnosis, and drive better outcomes for everyone affected by Niemann Pick diseases.

I have worked for NPUK for almost nine years, supporting the trustees with our financial controls. In that time, I have witnessed first-hand the direct impact that our charity has had on people’s lives. From fund-raising events to research grants, we are always striving to do as much as we possibly can.

Email: christine@npuk.org
Phone: 0191 415 06 93

I’m Rares, and I’m thrilled to be a part of the NPUK team as a Social Media Assistant. My role involves creating content, managing social media posts, updating the website and ensuring that our audience stays informed on the latest treatments and specific topics related to Niemann-Pick diseases. I’m passionate about improving every day and strive to make a positive impact with my work.

As of summer 2025, I have graduated with a BSc (Hons) in Computer Science from the University of Sunderland.

Email: rares@npuk.org