Meet the NPUK team who are responsible for the day-to-day running of the charity and providing the much-needed care and support, you can also learn more about them here.
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
In my role as Clinical Nurse Specialist for NPUK, I provide support, advice, and information to those affected by Niemann Pick Conditions. I have been in post for nearly 10 years and I understand the difficult journey that patients and families face. My aim is to help patients and families from diagnosis and beyond by providing practical and emotional support, coordination and delivery of patient care as well as providing education and advocacy.
I am available to speak to you over the telephone, email or in person at home, so please do get in touch if I can help in anyway.
You can contact Laura using the details below:
Laura Bell (BSc Hons Nursing) Email: laura.bell@srft.nhs.uk or laura@npuk.org
Tel: 07791499555
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 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 disease 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
I help define the charity’s content writing and social media strategy, as well as designing and producing our printed publications such as the NPUK News magazine. I was Executive Producer on the now multi-award winning short film, Go Make Memories (2019), which served to include the wider NPD community in the push for further awareness, and more recently wrote and directed the animated short Invisible Manners (2021) which starred Billy Boyd, Isy Suttie and Weruche Opia, and Invisible Interviews (2022), a documentary film series featuring narration from Sheila Reid. It feels incredible to part of a group who are completely devoted to helping those affected by Niemann-Pick disease. I am hoping through my work we can reach a far wider audience so that more people are conscious of these conditions.
Email: john@npuk.org
Phone: 07984 366 334
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
NPUK has been a lifeline to me and my family since my nephew, Harvey, was diagnosed with NPC in 2017. I soon discovered that they rely on fundraising, donations and grants to continue their incredible and essential work....I feel honoured and excited to join the team as the Fundraising Officer! I am here to help you if and when you would like to begin your fundraising journey; whether it is with fundraising ideas, guidance in setting up fundraising platforms, or providing supporting materials - I am here to support you, so please get in touch!
Email: jenny@npuk.org
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. I'm passionate about improving every day and strive to make a positive impact with my work.
I'm also a Computer Science student at the University of Sunderland, where I continue to grow my skills and expand my knowledge. Furthermore, I'm excited to bring my creativity, drive, and commitment to NPUK and support the community in any way I can.
Email: rares@npuk.org
03.04.24
Jackson Pountney, a PhD student at Aston University in Birmingham, needs your help. Jackson is undertaking a research project that will help us to better understand the impact of NPC on quality of life. This important work will help to advance understanding of NPC and support access to treatments in the UK and beyond...
Read more
