Canal boat trips and research programmes, the Primary Immunodeficiency Association

Children born with a primary immunodeficiency have little or no natural defence against infections.  There are more than 100 different kinds of these disorders and and those children with the most severe forms often don’t live beyond their first birthday.

They’re called ‘primary’ immunodeficiences because they’re caused inside the body by a faulty or a missing gene.

Funding from both Jeans for Genes and the PiA allowed researchers at the Institute of Child Health in London to develop ground-breaking gene therapy. 

This treatment has so far 'cured' 10 young boys of a potentially fatal immune deficiency called X-linked severe combined immune deficiency.  It's also known as 'baby in the bubble syndrome' because the children need to live in sterile conditions.

"I've had an incredible time swimming, steering the boat and making new friends.  I hope I can secure a place on next year's barge as it's always a brilliant little adventure, where you get to meet new people and do new things!" An extract from the ship's log of one of last year's passengers

In 2008, funding from Jeans for Genes will support the PiA's canal boat holidays.  Children who have difficulties in fighting off infections often don't get the chance to go away.  This is a wonderful treat for them, giving them some fun time away from Mum and Dad!

We'll also be giving funding to the PiA's research programme into a range of immune deficiencies.