Having been inspired by the huge efforts of so many taking part in team Scotland and Ireland towards BBS UK Carry the Gene campaign which aims to get a baton from John O’Groats to Lands End via the four nations, I felt I must do my bit. I’ll be running 100 miles, although not all at once, and taking part in The Great South Run to help raise much needed funds for this vitally important charity.

Bardet-Biedl Syndrome UK is the only registered charity supporting people with Bardet-Biedl Syndrome (BBS), their families and carers in the UK. We are a user led organisation, represented by adults with BBS and parents of children with BBS.

We support over 640 people diagnosed with BBS and their families; along with professionals involved in all aspects of the care and support of people with BBS in the UK.

Our vision is for people with Bardet-Biedl Syndrome to understand their condition, to feel valued and to thrive.