Toni Mathieson

Toni became involved with NPUK back in 2003 after receiving the news that her beautiful daughter Lucy, then just five weeks old, had Niemann-Pick Disease Type C (NP-C). She 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 her role as Chief Executive, she use the empathy and compassion from her personal experiences to provide hope for other families affected by Niemann-Pick disease.