Service Manager and Director at BBS UK Clinics Ltd
Tonia has been involved with Bardet-Biedl Syndrome UK (formerly Laurence-Moon-Bardet-Biedl Society) for nearly 20 years, following the diagnosis of her son with the syndrome at just a year old. The family attended their first Family Conference in 1998 and the difference it made to them as a family was profound.
Meeting young people and adults with the syndrome and hearing about their achievements enabled the family to picture a much brighter future and Tonia was happily coerced onto the Management Committee soon after. Starting out as the Fundraising Co-ordinator, Tonia has been the BBS UK Newsletter Editor since 2004.
In 2009, along with her BBS colleagues, Tonia worked alongside Professor Phil Beales to secure funding for specially commissioned Bardet-Biedl Syndrome Clinics held at four centres in Birmingham and London. Tonia was Children’s Service Manager for several years before taking on the role of Service Manager.