Our history

The idea of Jeans for Genes Day originated in Dorset in the early 1990s.  Two local brothers were the inspiration behind a fundraising day that's now one of the best known - and loved - charity events in the UK.

Where it all began

The two boys had chronic granulomatus disorder (CGD), a life-threatening condition which affects the body's immune system.   It meant they were very vulnerable to bacterial and fungal infections and had to take medication every day to try to keep them healthy.

The boys' family knew that an emerging charity, The Chronic Granulomatous Disorder Research Trust (reg.charity no. 1003425) aimed to fund vital research into the condition.  The boys' family and friends were anxious to join the hunt to find a cure. Their fundraising started with an 'auction of promises' in their local area which raised £7,000.

Inspired by this initial success, they came up with the idea of Jeans for Genes Day.

The group felt that the opportunity to wear jeans to school in exchange for a donation would have a very wide appeal.  Schools across the country were encouraged to take part and the very first Jeans for Genes Day raised £55,000!

In 1996, The CGD Research Trust invited three charities to invest in Jeans for Genes Day to make it a bigger and more successful national campaign.  It’s first year in its new form raised £860,000.

The three charities which, together with the CGD Research Trust, are the founders of Jeans for Genes Day are:

The Primary Immunodeficiency Association(reg. charity no. 1107233)
The PiA is the only charity in the UK dedicated to improving the quality of life of children and adults who have primary immunodeficiencies.  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 they’re called ‘primary’ because they’re caused inside the body by a faulty or a missing gene.  Primary disorders vary in their severity.  Those children with the most severe forms often don’t live beyond their first birthday.

The Society for Mucopolysaccharide Diseases (reg. charity no. 287034)
Mucopolysaccharide diseases cause progressive physical disability and in many children, they also cause gradual damage to their central nervous systems. 

Many of those affected will die in childhood.  Mucopolysaccharide diseases are rare conditions which affect one in 25,000 babies.  There are 21 different MPS conditions which means every eight days an affected baby is born.

Great Ormond Street Hospital Charity (reg. charity no. 235825)
Great Ormond Street Hospital is home to the widest range of paediatric expertise in Britain.  It’s also the largest centre for research into childhood illness outside the United States.  The Institute of Child Health is the hospital's research arm.

Rhys Evans after gene therapy

A major breakthrough

In 2002, research which Jeans for Genes had invested in since 1996 resulted in a major breakthrough in genetic research.  Gene therapy was trialled at Great Ormond Street to treat a condition called X-linked severe combined immunodeficiency or X-SCID.

It’s often called ‘baby in the bubble’ syndrome as the children are so prone to infection they have to live in a sterile environment. 

Rhys Evans (right) was the first boy to receive gene therapy for X-SCID.  To date, ten boys have been successfully treated.  Work is ongoing to widen its use to treat other conditions.

The future

Since 2002, Jeans for Genes has steadily raised more funds each year.  We now raise around £3million annually but our ambition is to raise much more.

Without the commitment and generosity of the four founding charities, Jeans for Genes couldn't do the work that it does.  We are incredibly grateful for their continued support and the input from their chief executives who sit on our board.

With their help, Jeans for Genes aims to change the world for children affected by genetic disorders.  We do this through funding much needed help and support for families and ground-breaking research into treatments and cures.