Every year on the first Friday of October, schools across London and the rest of the UK allow pupils to make a £1 donation to leave their uniform at home and wear their jeans to school for Jeans for Genes Day. So what is behind the national fundraising day?  

Jeans for Genes has been helping to change the lives of children affected by genetic disorders since 1996. By asking children and adults to make a small donation to wear their jeans to work or school on this one day of the year, the charity has raised more than £30million to fund research, and support programmes for children and their families. 

A genetic disorder is a health condition caused by an alteration in a person’s DNA. This could involve a change to a single gene, parts of a chromosome being missing, altered or repeated which would affect several genes, extra chromosomes or chromosomes missing all together. Genetic disorders can affect a child’s life in many ways including their movement, their learning and their life-span. There are more than 4000 recognised genetic disorders and although, individually, the conditions are rare, together they account for more than half of all childhood deaths in the UK.

Far from just wearing jeans, pupils, staff and parents often make Jeans for Genes Day a fun event involving everything from wig-wearing and cake sales, to fashion shows and concerts. Many schools also use the day as an opportunity to help children learn about accepting the differences that make us all individuals. 

Children with genetic disorders can often be bullied or excluded by their peers for being different, and a lot of this discrimination comes from fear or a lack of understanding. Jeans for Genes works to change this by providing schools with multimedia educational resources that explore the subjects of genetics, difference and citizenship. This year sees the introduction of brand new interactive whiteboard activities, animations and films about affected children’s personal experiences.

“Our materials have been really effective in bringing to life the reality of what having a genetic condition actually means for a child,” says Caroline Sharp, the charity’s head of strategic communications. “As well as having great fun wearing their jeans, we want to encourage children to understand and be accepting of the differences that one small alteration in a child’s genes can make.” 

Schools can also take advantage of Jeans for Genes’ volunteer speakers who give fun presentations about the charity’s work and talk passionately about their own family’s experience of genetic disorders.  

The money raised on Jeans for Genes Day is distributed to genetic charities through the charity’s grant programme. Charities which focus on specific genetic conditions can apply for up to £25,000 to help them provide children with the support and care they need now, such as family weekends, equipment and helplines, or research which could transform their lives in the future. 

Jeans for Genes also provides ongoing support to research organisations working on identifying the causes of genetic conditions and potential treatments and cures. The University of Central London Institute of Child Health in London (UCL ICH), the research centre of Great Ormond Street Hospital, receives around a quarter of all funds from Jeans for Genes Day every year.

In 2002, research which Jeans for Genes had invested in since 1996 resulted in a major breakthrough in genetic research and a potential cure. Gene therapy was trialled at the UCL ICH to treat a condition called X-linked severe combined immunodeficiency or X-SCID - a condition 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 was the first boy to receive gene therapy for X-SCID. Without it he would have struggled to fight off the simple germs that he was so vulnerable to, but now he’s a healthy, happy schoolboy. To date, ten boys have been successfully treated and work is ongoing to widen its use to treat other life-threatening conditions.

The UCL ICH is also home to the Jeans for Genes Centre for Inherited Diseases. The centre allows researchers to come together to share resources, exchange ideas and work collaboratively to identify the genes that cause inherited disorders, and to develop treatments and cures. 

But the nature of medical research means it can take many years for an effective treatment to reach children affected by a genetic condition. In the meantime, care and support is crucial to changing their lives for the better. 

Funding from Jeans for Genes helps the Chronic Granulomatous Disorder Research Trust to provide a specialist nursing service for children with the condition at Great Ormond Street Hospital in London.

Ciaran is ten and lives a very active life of bike riding and basketball. But like his 20-year-old brother, his chronic granulomatous disorder (CGD) means he’s very vulnerable to bacterial and fungal infections that wouldn’t cause problems to someone with a fully working immune system. He can’t play in grass cuttings, clean out the school guinea pig or be close to building work because the dust could make him seriously ill.

“We can turn to the CGD nurse when we need her so Jeans for Genes means a lot to us,” says Ciaran’s mum, Lea. “We hope the research they fund will find a cure. Please keep doing Jeans for Genes Day - you make a difference to my family every day.” 

Jeans for Genes has also recently helped the CGD Research Trust to start a psychological support helpline to help children and adults deal with the emotional difficulties of living with a chronic condition.  

The UK Thalassaemia Society supports families affected by thalassaemia, a genetic blood disorder which causes life-threatening anaemia. Children with this condition need medication every day and need blood transfusions every three or four weeks to survive. They can be very tired, have bruising from their injections and need a great deal of time off school. Thalassaemia is a condition which is more common in Asian, Middle Eastern and Mediterranean communities, so for parents living in the UK who don’t have English as their first language it can be very difficult to explain their child’s condition to teachers. Jeans for Genes provided funding for the UK Thalassaemia Society to produce a leaflet, ‘Thalassaemia in Schools’, which helps parents easily explain their child’s needs to their school.

Elaine Miller, the Thalassaemia Society’s co-ordinator says: “Children with this condition are in danger of being educationally disadvantaged because of the lack of understanding of this rare condition. For example, teachers might not know that they can award medical register points so a child’s record of attendance isn’t affected by the amount of time off they need. This leaflet is proving to be very successful in addressing difficulties like these.”  

Copies of the leaflet are available free from UK Thalassaemia at: www.ukts.org

2009 will be Jeans for Genes’ 14th year. The charity wants to raise at least £3million on Jeans for Genes Day, Friday 2nd October, to help change the world for children with genetic disorders. For more information, to register for a fundraising pack, or to download our educational materials, visit: www.jeansforgenes.com or call freephone: 0800 980 4800.

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