Thanks for taking the time to visit our JustGiving page.

Who are we?: we are a group of scientists from the Johannes Gutenburg University of Mainz, Germany and parents of young people with the syndrome.

What is our plan?: We are going to cycle 676 km/420 miles in 4 days (6th – 9th of September) from Mainz to Northampton in a relay race for this good cause.

Why?: We want to raise money for the charitable organisation BBS UK and raise awareness of BBS itself. All donations will directly go to BBS UK.


We are intending to raise money by cycling from Mainz to Northampton, where the BBS UK patients’ conference is taking place in September. BBS is short for Bardet-Biedl syndrome. This is a rare congenital disease, which can cause many different symptoms, such as blindness, kidney failure and situs inversus, and which can develop at an early age. With this fundraiser, we want to raise money for the charitable organisation BBS UK, who have been supporting and helping affected people and their families since 1993. If you would like to support us, we would be very grateful for any donations.

All those taking part are kindly self-funding so that every penny raised goes directly to BBS UK where it's needed.

How can I help?: Share our plan wherever you can and we would be very grateful for a donation. More information about how to donate and the trip can be found below.