Key facts about Jeans for Genes

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

• 1 in 33 children born in the UK has a genetic disorder or birth defect.  That’s one baby born every half an hour who could be seriously affected.

• There are more than 4,000 recognised genetic disorders.  Doctors have identified the gene responsible for around 1,000 of these.

• The idea of Jeans for Genes Day, the ultimate dress down day, originated in Dorset in the early 1990s.  Two local boys affected by chronic granulotmatus disorder (CGD) had inspired family and friends to come up with the idea of a Jeans for Genes Day.

• The CGD Research Trust, the support group for the boys’ condition, realised that wearing jeans and making a donation was an effective fundraising idea.  They decided the Day needed investment if it was going to raise significant amounts of money. 
• Three other charities involved in the support of children with genetic disorders were invited to join them.  They were The Primary immunodeficiency Association, The Society for Mucopolysaccharide Diseases and Great Ormond Street Hospital Charity.  The first national Jeans for Genes Day took place in 1996 and raised £860,000.

• 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's Institute of Child Health to treat a condition called X-SCID, an immunodeficiency which affects boys.

• Often called ‘baby in the bubble syndrome’, Rhys Evans was the first child to be ‘cured’ of X-SCID by using gene therapy.  Without this ground-breaking treatment he probably would have died from an infection but he’s now a happy, healthy schoolboy.

• A further nine children have been treated using gene therapy and work is ongoing to widen its use to treat other conditions.

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

If you’d like to know more, contact our communications team; Caroline Titman on 020 7199 3321 or Lisa Pettifer on 020 7199 3306 or at pressoffice@jeansforgenes.com.