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 became involved with NPUK back in 2003 after receiving the news that my beautiful daughter Lucy, then just five weeks old, had Niemann-Pick Disease Type C (NP-C). I received amazing support from the charity during those difficult months, and in the following years when Lucy’s brother and sister, Hannah and Samuel, passed away from the same condition. In my role as Chief Executive, I use the empathy and compassion from my personal experiences to provide hope for other families affected by Niemann-Pick disease.
Phone: 07816 398 591
As Clinical Nurse Specialist for Niemann-Pick diseases, I am always available to offer support and advice to you and your family and friends regarding any aspect of Niemann-Pick disease, plus home visits whenever necessary.
You can contact Laura using the details below:
Laura Bell (BSc Hons Nursing) Email: email@example.com or firstname.lastname@example.org
Tel: 0161 206 0228
Mobile: 07791 499 555
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
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. More recently 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. 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.
Phone: 07984 366 334
I've been working for NPUK for almost five years and in that time I have witnessed firsthand 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.
Phone: 0191 415 06 93
My family and I have been a part of the NPUK community for a number of years as my mother, Gloria, was affected by NP-C. Knowing someone is there to call and talk to when trying to manage the challenges of this condition makes a massive difference. This has given me a great passion to help other families, and in my role with NPUK I will be dedicated to offering care, support and guidance.
Mobile: 07787 818 885
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!