Bardet Bidel Syndrome (BBS) is a degenerative rare disease. It varies in severity and
can result in degenerative blindness, kidney failure, bowel and heart
complications, learning disabilities and many more complexities that affect each person with BBS differently. It is a complex syndrome for which there is currently no cure. The BBS UK society are an active group who support, care for and proactively are searching for a solution to the many different variants that BBS presents with. In our own case with our lovely Conor, our most anxious need is a cure for his degenerative blindness. Presently this is the issue that
restricts him the most and BBS UK have a team of researchers searching for a cure or at least something to slow down the progress of the sightloss. We have all heard about "Gene Therapy" but the research needs to be for the specific gene that fits our BBS members. 

BBS are a small but formidable group of dedicated support workers, volunteers and families trying to make a difference to our effected family members.

BBUK link up with research labs around the world but to fund the research there
must be funds in place to allow this to happen and as BBS is a degenerative
condition time is a commodity we are in short supply of.

BBSUK support us, The Thompson family in many ways. They are a source of information on the latest developments/treatments for BBS. We are supported emotionally as we move through the various challenges BBS presents to us. The society fund overnight accommodation for us when we have to travel to Birmingham
Queen Elizabeth Hospital for the BBC clinic and at the clinic themselves they are staffed with support workers who are knowledgeable, understanding and kind which makes such a difference.

With advances in medical science it must be possible to believe that they WILL find a way to either cure or stop the progression of this syndrome....

Again it's all a race against time and as we all know time is money and the best way we can help is to fundraise and ask for a few pennies to come the BBS way this Christmas.